Medical Foods Petition

Date

User Response

10/09/2009  Cristy Balcells, mom to Eva with Leighs disease who takes Coenzyme Q10, thiamine, and riboflavin (Cost of these medicines from a compounded pharmacy is $400/month)
10/17/2009  My kids & I were born w/ mitochondrial disease. It's incurable but supplements help. We pay a $2300/month insur. premium but they've never paid the $800/month cost. We do but it's hard. Until my boys died 2 yrs ago supplements cost ~$2000/month.
10/16/2009  My name is Kathy Orlow and my 14 year old daughter takes CoQ10 and Alpha-Lipoic Acid, among other supplements, in an effort to treat her suspected mitochondrial cytopathy We spend at least $200 a month on her supplements.
10/12/2009  Paying approximately $200.00 a month on supplements needed for mitochondrial disease is a hardship on an already difficult life suffering from this disease that robs me of my energy and ability to live a normal life.
10/14/2009  I strongly support any legislation which mandates health care payments to cover medical foods for treatment of inborn errors of metabolism, including mitochondrial diseases.
10/16/2009  Coenzyme Q10, Carnitor, Riboflavin, Creatine, B50 complex, Melatonin, Magnesium Oratate, L'arginine, Alpha Lipoic Acid Costs approx $400 per/month
10/09/2009  WITHOUT THESE SUPPLEMENTS, AND MANY OTHERS WHICH ARE PRESCRIBED BY MY SON'S DOCTORS, HE WOULD NOT SURVIVE. tHE COST OUT OF POCKET TO PROVIDE THESE LIFE SUSTAINING MEDICAL SUPPLEMENTS HAS FINANCIALLY RUINED ME AND NOW OUR HOME IS IN JEAPOARDY.
10/14/2009  My daughter takes COQ10 ($250 per month not covered by insurance) and L-Carnitine. Please help us Senator Kerry! Thank-you!
10/16/2009  We live in Ca. and have to pay about $300.00 out of pocket for Cytoq for our child who has a fatal form of Mitochondrial Disease. Please support this legislation.
10/09/2009  My name is Suzann Leone I live in Massachusetts my son needs Coenzyme Q10 and other supplements to help with his mitochondria I support this legistaltion Suzann Leone
10/14/2009  My daughter and I both take Coenzyme Q10, carnitine and creatine. The monthly cost is $400.
10/22/2009  COQ10, L-carnitine, riboflavin, thiamine, vitamin E, and multi vitamins. Cost per month is $150-$250 per month depending on dosing based on weight and trouble that he is having at that time.
10/14/2009  Six out of seven of our immediate family members have mitochondrial disease requiring the following supplements: CoQ10, Levocarnitine, Riboflavin, vit B-Complex. The $$ burden of these uncovered supplements approaches $3000/month, more than we can afford.
10/19/2009  My son requires a low fat low protein diet because he can't metabolize such. He is also allergic to wheat, nuts and legumes which make all the more difficult. He also requires miralax and exlax daily in order to keep his system moving.
10/13/2009  janice l crespi
10/13/2009  My 17 yr old son is taking Coenzyme Q10, L-Carnitine, R-Lipoic Acid, DHA, Vitamins E, C, B-Complex, and extra Riboflavin. He has been taking a "Mito - Cocktail" for 10 years. It has been vital to his health and costs $300.00 a month.
10/11/2009  Please support legislation which mandates health care coverage of medical foods for treatment of inborn errors of metabolism, including mitochondrial disease.
10/09/2009  We use Coenzyme Q10, L-Carnitine, Riboflavin, creatine, thiamine and other supplements at the expense in excess of $300 per month.
10/16/2009  Co-Q10, creatine, L-Carnitine
10/12/2009  We pay $450 a month for the supplements to treat my daughter's mitochondrial disease (age 6). She takes CoQ10, L-Carnitine, and Creatine at present. These supplements have made a huge difference in her development, more than any Rx medication ever has.
10/10/2009  I adopted a critically ill baby not knowing her diagnosis for 6 long years. Janis takes CoQ10, L-Carnitine, Riboflavin, creatine, B1, B2, C, E, and ALA twice a day. Senna once. Her special needs adoption provides Medicaid. Coverage for all! Karen-Maine
09/20/2011  Our son is not on a Mito cocktail YET! The cost is too expensive. We have spent up to $7,500 a year, on out of pocket medical co-pays (with insurance) for medicine, hospital stays and doctor co-pays. I am home with our son and my husband is a firefighter.
10/10/2009  Please support medical foods that some patients cannot even get because of the high cost. It is the only hope we have. Linda Bessette
10/09/2009  Laura Fant Florence, KY Child with mito Aidan Fant age 5 year Coenzyme Q10 Levocarnitine Niferex $2000/mo
06/10/2010  CoQ10, Levocarnitine, Vitamin E, C, D, Folic Acid supplement, high doseage of multi-vitamin. Average monthly cost $100.
10/12/2009  My 6 yr old son has an underlying mitochondrial disorder leaving him developmentally delayed with PDD_NOS and a seizure disorder. He uses L-carnitine and Cyto Q to help him live day to day, Cyto Q is not covered by our insurance adding to our challenges.
10/14/2009  I strongly support legislation that would mandate health care payments for medical foods such as Co-enzymeQ10, Carnitine, RIboflavin, etc. We are a family with nine (9) affected members. Cost is staggering.
10/14/2009  Thank you for this consideration. My son has to have special formula and 3 different medicines every day, all day. Please help me to help him.
10/12/2009  Senator Kerry, As an adult patient with Mitochaondrial Disease I can assure you this legislation is necessary and long overdue. Struggling to pay for Co Q10, L-Carnitine, Riboflavin, Creatine, and other supplements has been a hardship.
10/09/2009  Nena Johnson from MN My son who is 4 currently takes Cyto-Q ($500/month), Vitamins B-1, B-2, E, C ($25/month total), creatine ($20/month) and alpha lipoic acid ($20/ month).
10/14/2009  Co-Q10 $40.00/month Vit E $30.00/month Fish Oil $18.00/month Vit B2 $10.00
10/18/2009  CoQ10, L-Carnetine, Riboflaven, Vit. E,Alpha Lipoic Acid,L-Arginine, Baby aspirin. This is what my daughter took for vitamins for MELAS.
10/10/2009  These medications are often lifesavers, yet often very expensive. Financial help is needed by many patients requiring these supplements.
10/14/2009  My son take Coenzyme Q10 and costs $91 a bottle with discount given by company for mitochondrial disorder. Levocarnitine is currently covered by insurance.
10/14/2009  We are affected by this and would like you to consider this bill..
10/17/2009  My name is Sandra Rowe of Framingham, MA. Our 6 year old daughter has mito and I strongly support the requests of this petition. Our daughter takes CoQ10, Carnitine, Creatine plus monthly enteral supplies
10/10/2009  My daughter is on the following for mito: creatine $30/month, Coenzyme Q10 $70/month, alpha lipoic acid $15/month, and coconut oil (I cannot afford MCT oil) $30/month. Her L-carnitin is covered. Joan Seifert Cincinnati OH
10/14/2009  My two daughters require: CO Enzyme Q 10, B2, Selenium, Niacinimide, B6, Vit E, Vit C, alpha lipoic acid, l-carnitine, magnesium glutamate, magnesium orotate, B 50 in addition to many prescriptions.
10/10/2009  Elecare Med. Formula @ 33$ day: 990$ month, 100% Elecare for daily nutri. via J-Tube also bags, syringes, addit. costs. We're "over income" for fed. support programs. Private ins. wih 20% deduct. - 2 mill. lifetime cap. $2500 month.
10/09/2009  With a mitochondrial disease (MELAS), I spend at least $85 a month & often lots more on supplements a month, including COQ10, L-Carnitine, Riboflavin, other B vitamins, and several others. I live on a fixed income as am disability retired at age 36.
10/10/2009  I spend almost all the child support for my 3 sons paying for these necessary enzymes. Their father is court-ordered to pay their medical expenses, but won in court NOT paying these expenses which are taking up almost all the child support.
10/15/2009  Senator Kerry, thank you for your efforts in this critical petition that would help many families struggling with the finacial burdens on top of the already enormous burdens of living with illness.
10/09/2009  We currently have to purchase out of pocket, in addition to other medical expenses: CoEnzyme Q10, Creatine, D Ribose, Riboflavin, B100, Probiotics/acidophilus, Vitamin D, and Whey Protein powder, over $200/month for both my son and myself. Please help!
10/11/2009  Co-Enzyme Q10 Mega B 150 L-Carnitine
10/10/2009  multi-vitamin, alpha-lipoic acid, methyl-B12, acetyl-l carnitine, creatine,
10/10/2009  My 26 year old son is diagnosed with a mitochondrial disorder treated by physicians at UCSF with high dose carnitine and Co Enzyme Q10 (Tishcon/LiQSorb), which have saved his life, but costing me over $1000/mo., which I can't sustain. Edward Oklan M.D.
10/15/2009  My son currently takes:Coenzyme Q-10, L-Carnitine, Selenium, Vitamin D3 drops. Current monthly cost is about $50-$200, depending on the brands we use.
10/16/2009  My son is fed through a feeding tube and his formula is non covered by insurance and it is life saving, please help save a child' life.
10/23/2009  Our son has Mitochondrial Myopathy Complexes 1 & 4. We use CoQ10, L-Carnitine, Vit C, thyamin.. cost monthly about $150 ... Please help our children be covered for the only known help!
10/16/2009  Mito-cocktail: Co-Q 10, B1, B2, B6, Vit C, Vit E (compounded mega doses) L-carnitine 2500/day Calcium Vit D All needed to support organ function in our 11 yr old son, Matthew due regressive nature of his Mitochonrial Disease.
10/12/2009  I support the above proposed legislation.
10/09/2009  Senator Kerry, I urge you to ask Congress to include Mitochondrial Disorders in legislation to cover medical supps . My 4 kids with Mito need coQ10, L-carnitine, Ribo, creatine, thiamine, others for $1000+mo to sustain life. Diane Boyle, Wall, NJ
10/09/2009  The vitamins and supplements my son and I use are: Cyto Q (CoQ10), L-carnitine, vitamin B, vitamin C, L-arginine, vitamin E, vitamin D, creatine, d-ribose, lipoic acid, n-acetyl cysteine. We spend about $900 a month on these supplements.
10/12/2009  My grandaughter is taking all of the above meds and much more none covered by ins. please include mitochondrial meds and drink supplementa in your bill thank you good job
10/09/2009  coenzyme Q10, L-carnitine, riboflavin, thiamine, creatine, magnesium, alpha lipoic acid
10/09/2009  My daughter is required to take Coenzyme Q10, L-Carnitine, B vitamins to support her system as she struggles with mitochondrial disease. She lives on disability income so her extended family is forced to by these necessary supplements for her.
10/09/2009  Coenzyme Q10, l carnitine, riboflavin, thiamine,creatine, and other medications that are given in compound forms from a doctor. Natual product that help conditions that doctors request to help.
10/09/2009  I strongly support this legislation!It is as neccasary as insulin for a diabetic.My wife has mitochondria disease.It costs 80.00 per month for us.
10/14/2009  Our Child Currently Takes: B50Complex CoQ10 Vitamin D Vitamin C L-Carnitine Neocate Jr Enteral Formula
10/19/2009  Nicole Albrecht. Chicago, Illinois. CoQ10, Folic Acid, Roboflavin, Carnitor. Approx. Cost per month is 400 dollars.
10/10/2009  Dear Sen. Kerry, As a teacher of severely disabled children for 17 years, I am well aware of the benefits of supplements that are not considered conventional by the medical industry or by the insurance companies. They work! Please help.
10/16/2009  My son is diagnosed with mitochondrial disease. He takes coq10, carnitor, vitamin k, and alph lipoid acid. It costs approx. $500 a month.
10/14/2009  Tischon CoQ10 Carnitor Creatine Mega B Vitamin $150 month
10/11/2009  In support of and recognition of the devastating impact that mitochondrial disorders may have upon a child, adult or family, I strongly support any legislation which mandates health care payments to cover medical foods for treatment.
10/16/2009  Help people with Mito
12/13/2013  I am so Sorry I missed the dead line; God Bless You, Cristy..... For being our voice.......much Love, Lori :)
10/09/2009  Co-Enzyme Q10, L Carnitine, Riboflavin, B-1, B-2, Vit C, Vit E $600 plus per month
10/15/2009  Purchasing the supplements that keep my daughter alive and healthier has been and continues to be a HUGE financial burden on our family. My daughter was expected to die before the age of 12. She's alive at 24 thanks to supplements. Thanks!!!
10/12/2009  L-Carntitne, Coenzyme Q10 cost 45.00
10/09/2009  I support the resolution. Our son has MELAS and meds cost a lot.
10/12/2009  coenzyme Q10 400 mg TID L-Carnitine 990 mg TID creatine 5Grams BID cost: $3680.00/year
10/10/2009  My adult daughter takes Coenzyme Q10 as well as numerous other supplements which are critical to her because of Mitochondrial Disease. Without these supplements she could not lead a normal life.
11/11/2009  Our son Anthony takes Coenzyme Q10 sixy dollars, Riboflavin 5 dollars, Multivitamin 5 dollars. It would help greatly if they were covered. Sarah Serrano of Indiana
10/22/2009  CoQ 10, B6, B2, Carnitine for 3 people in our family that are affected by Mito, costs us approx $300.00 per month. That's when we can afford it. When we can't we don't take it.
10/15/2009  I must take large amounts of acetyl-l-carnitine and riboflavin for mitochondrial disease. Without these supplements I have myoclonic seizures, daily migraine, severe debilitating muscle pain, arrhythmias and heart failure. They cost $150/month
10/10/2009  I have mitochondrial disease and require medical food including an elemental formula (pre-digested food that is pumped into my intestine), Co Q-10, Riboflavin, L-carnitine and alpha-lipoic acid. This costs ~$300/mo.
10/15/2009  Please support the passage of this legislation, without these medically necessary supplements my child condition would again become critical. Annually these medications cost us upwards of 8,000 . Mary Fessenden RN
10/18/2009  Elemental Formula (Elecare) L-Carnitine Leucovorin Coenzyme Q10 riboflavin Cost/month = $350
10/19/2009  These medications have made a world of difference for my son - they are definitely essential. He is on Coenzyme Q10, levocarnitine, vitamin D and an amino acid based elemental formula, at a cost of over $1200 per month.
10/11/2009  David Long, Pennsylvania Vit C, Alpha Lipoic Acid, multiple B vit, Co-Q10, Vit E, L-Carnitine $95.00/month
05/20/2010  CoQ10, Creatine, Vitamin C, Riboflavin,
10/11/2009  My daughter and I have Mitochondrial disease. We both take CoQ10, Riboflavin, Vit C, creatine and multi vitamins. Cost of this runs us about $70-to $80.00 a month.
05/20/2010  CoQ10, Creatine, Vitamin C, Riboflavin,
10/14/2009  Supplements my 2 undiagnosed but suspected Mito require daily: Calcium, Vit D, Biotin, probiotics, Mutlitvitamin - which is a main benefit we see decrease in skills and interaction without simple MV, L-Carnitine
10/09/2009  My daughter suffers from a Mitochondrial disorder and will never be able to hold down a full time job. Her medications and supplements will become to costly for her to afford.
10/14/2009  2 of my 3 children have mitochondrial disease. The cost of their Coenzyme Q10 is $100 per month each. Our doctor indicates that the boys need this as "medicine" however it is not available by prescription.
10/17/2009  My son requires specialized enteral formula. Our insurance company carved out coverage regardless that it was medically necessary and life sustaining. The cost of the formula is greater than our monthly mortgage payment! Coverage should be mandated!
10/11/2009  I live daily with mitochondrial disease and the devistating effects on my body. These medical foods are incredibly expensive and need to be covered by insurance.
10/10/2009  Cheryl Sacunas, PA. My husband has a mitochondrial disease and takes the following: Coenzyme Q10, L-Carnitine, Alpha Lipoic Acid. Monthly cost averages $80.
10/11/2009  My four year old daughter lives with mitochondrial disease. Because of these supplements, she actual has the energy to perform everyday activities. Without them, she could barely function.
10/22/2009  I am a single mother and my daughter has mitochondrial disease and needs CoQ10, levocarnitine, and incontinence supplies which are not covered by insurance or medicaid and cost $700 per month. Please help.
10/09/2009  I support this Louise Weiand
10/22/2009  I am a grandparent of a mito child who needs these supplements that come at a high monthly cost. I support legislation that would mandate coverage for these medically necessary supplements.
10/10/2009  Elemental Formula, Neocate One+ (2500/mth) Coenzyme Q10(120/mth) Other, (100/mth)
10/10/2009  I will be sending a note I wrote to several people I know directly to Senator Kerry...Thanks for the opportunity. My grandson is one of the unfortunate children with this devastating condition.
10/20/2009  I am Susan McMurry from Greenville South Carolina and I have two children with mitochondrial disease. They both must take the Coenzyme Q10 and L-Carnitine each month. It cost us on average $400 per month to ensure they have the correct medication.
11/09/2009  My vitamins have helped me greatly to deal with my mito but they are so expensive. It would make living with the disease so much easier to have these covered by insurance or get some sort of financial assistance.
10/09/2009  My son is going without these supplements right now because we cannot afford them, please make these available to help ALL the children and adults affected by this disorder.
10/10/2009  My daughter is taking Coenzyme Q10, Creatine Monohydrate, and Alpha Lipoic Acid. It costs our family $400 to $600 a month.
10/10/2009  folinic acid for the treatment of mitochondrial disease too and MB-12 for the treatment of mitochondrial induced autism.
10/13/2009  Annie Gorham, MA - L-Carnitine, Co-Q10, Magnesium, Vitamin B-Complex, Vitamin C, Vitamin D - approximately $200/month.
01/27/2010  Coenzyme Co q10 L-carnitine
10/16/2009  Son passed away, but he took Vitamin K, Coenzyme Q10, L-Carnitine, Riboflavin, Creatine, and Thiamine
10/15/2009  I am in support My son takes Coenzyme Q10 Just starting. We are waiting on insurance.
10/09/2009  My son Kolton takes- L-carntine, CoQ10, thiamine, selenium, vitamin C, B6, pantothanate acid, biotin. We have had an extremely hard time getting our insurance company to accept that these are medical necessary. Please help!!!!!
10/09/2009  Coenzyme Q10, L-Carnitinee, Thiamine, Folic Acid, Vitamin B, B10, Vitamin C....
10/13/2009  My son Christopher McDuffie has To take Pediasure w/fiber 8oz -4 times daily for nutritional. He doesn't eat by mouth enough to support life. Cost to us is $225 month. He also takes CoQ10 that cost $330 month.
10/12/2009  I have two grandchildren with mitochondrial disease. My daughter and son-in-law use these supplements to provide nutrients that our little guys cannot get from food. They need all of these supplements and the cost is huge. Please help us.
10/09/2009  my daughter has a mitochondrial disorder that has severely affected her growth. medical foods are needed on a daily basis. please support this bill.
10/10/2009  I would really appreciate if you endorse this. Mitochondriacs need this. When Insulin is covered, why not medicines for Mitochondrial diseases? Please...
10/13/2009  coenzyme q10, riboflavin
10/16/2009  Riboflavin, Coenzyme Q10,Creatine, Multivitamin, Vitamin C, Vitamin E $100.00/mo.
10/09/2009  CoQ10- $80/mo. L-Carnitine - $40/mo B-12 - $8/mo Vit D - $5/mo Gatorade- $40/mo
10/19/2009  My daughter takes CoQ10, L Carnitine, Creatine Monohydrate, Alpha Lipoic Acid and all her daily nutrition from enteral feedings (formula through a gtube). Costs total over $500 in cash each month for these.
10/09/2009  Coenzyme Q10 (Cyto Q) $900.00 L-Carnitine $323.00 Riboflavin -150.00 Alpha Lipoic Acid 125.00 Creatine-300.00 Walnut oil-25.00 Polycose-100.00 Cornstarch-5.00
10/09/2009  Deborah Mullaney,MA CoQ10, Magnesium,Calcium,L-carnitine,B1,Riboflavin,creatine Omega 3-6-9,Vit D & E
10/16/2009  I am Kathy Rivers, from Ellicott City, MD. My 3 kids and I have Mitochondrial Disease. We need to take L-Carnitine, CoEnzyme Q10, Creatine, Riboflavin, Vitamins C and E, Methylcobalamin, Folinic acid, Glutathione and Alpha Lipoic Acid to manage our mito.
10/11/2009  Donna Chance Louisana Coenzyme Q-.10 $100.00 a bottle L-Carnitine $80.00 a bottle peptamen 1100.00 a month {feeding tube} We get no help from the Federal goverment or the state for our daughter.
10/19/2009  We credit Elecare for saving our childs life. Her current diagnosis are mitochondrial encephalomyopathy complex I defect,colonic eosinophilia and methyltetrahydrofolate deficiency.
10/09/2009  Please support legislation that would help anyone with a mitochodrial disorder live as normal a life as possible. It is high time that this condition is covered and recognized by insurance.
10/14/2009  Many children with mitochondrial disease use these supplements to stay alive. Please do not ruin the children's chance to have the most fullfilling lives that they can.
10/13/2009  I do not currently use medical food for my mitochondrial disorder, but a recently prescribed one that I tried to take was $250 per month. I do take L-Carnitine, but my insurance does mostly cover that.
10/09/2009  I have an inborn error of metabolism that requires dietary restrictions ncessitating nutritional supplementation that costs me approx. $385/month out of pocket for the rest of my life. At present, none of that is covered or reimbursed by my insurance
10/23/2009  Our grandson has mitocondrial disease and receives 7-8 medications and supplements per day so he has enough muscle energy to function. Please help his family with the supplement costs. They are expensive.
10/11/2009  MY 2 year old son is unable to eat table foods and has intolerance to animal/soy protien. He must take supplements - CoQ10 - $256.00 monthly Specialized infant formula Neocate - $600.00 montly and Nurta (medical food) - $180.00 monthly.
09/20/2011  Coenzyme Q10, Carnitine, Riboflavin, Levocarnitine, Vitamin C, Alpha Lipoic Acid
10/09/2009  If you could research Mito disorder my granddaughter has this disorder and her vitamins supplements Q10, L-carnitine and others are critical for her. Please include medical foods in coverage.
10/16/2009  I have two daughters with mitochodrial disease. They take the following supplements-fish oil, Coenzyme Q 10, creatine and Centrum Silver-approximately $200/month. These are in addition to prescription medications.
10/20/2009  Monthly costs for my child are upwards of 300-400.00. This is most likely the lower end of what we pay. She is on several supplements to improve her quality of life, including the ones above and almost all are not covered by insurance.
10/09/2009  Amy Albertson
10/16/2009  please support this as my son has this disease and without coverage these supplements costs him several hundred dollars a month. There is research that supports the use or these medical foods and rate of recovery.
10/09/2009  My son has mitochondrial disease and needs to take a supplemental food every night so he can wake up healthy in the morning. This is very costly, and not a choice for us. Please help.
10/11/2009  My 4 year old twin granddaughters were diagnosed at 2 with autism and at 4 with mitochondrial disorder, as well. Their neurologists prescribe treatment of CoQ10, L-Carnitne, and Probiotics at a cost of $500 per month. Please help!
10/10/2009  I am an Adult diagnosed with this disease. We spend at least $300 months for related medical supplements and medications The supplements do help with my muscle problems and metabolic disorders.
10/10/2009  Our whole family,my two daughters, son and myself are all afflicted by mitochondrial disease. We are currently on the verge of losing our home because I decided to pay for my children's non covered medications and medical care vs. our mortgage payment.
10/10/2009  My 19 month old son has a mitochondrial disease and these medical foods are the only treatment offered to help slow the progression of this fatal disease. Please help families like mine to ease our financial strain.
10/12/2009  Cheryl Brookshire, Florida CO-Q10, Riboflavin, Creatine, Lipoic Acid
10/16/2009  Please do this to help the people in need!!!
10/16/2009  My name is Heather and my son Matthew has both a metabolic and mitochondrial disorder. He takes Carnatiene and Coenzyme Q10. Both of those cost me $80 a month. The Q10 is not covered at all and the Carnitiene is considered a tier 3.
10/14/2009  q10,l-carnitine,c 1000,e800,b400
10/10/2009  Coenzyme Q 10 - $250/month Riboflavin $10/month
10/16/2009  Dear Seneter Kerry, My son Caden is 5 years old, and suffers with Mitochondrial Disease. Some of Caden's supplements are not covered under our insurance, and in turn hurt my family financially. Please support this Legislation too help Caden. Thank you!
10/10/2009  My son Eli takes CoEnzyme Q10 with ubiqutol once daily at a monthly cost of approx $30.00. He has recently been prescribed two new viatmins which I have been told are costly as well.
10/14/2009  Please help all of our families are who are paying outrageous amounts of money to keep our children and/or ourselves as healthy as possible. These supplements are essential to my daughters life and being a low income family makes it very difficult for us.
10/09/2009  Levocarnitine, Conenzyme Q10
10/09/2009  I have mitochondrial disease and take Coenzyme Q10 everyday and I unfortunately know how devistating this disease can be. That is why I'm signing this.
10/11/2009  My daughter was born with mitochondrial disorders. She is taking COQ10, L-Carnitine, Riboflavin and other medicaitions everyday. Every months supplements cost us $200.00 not coverd by insurance and there is no end to fight with this disorder.
10/09/2009  As a parent of a 5 year old son with Mitochondrial Disease I know first hand the devistating effects that this disease can cause. Imagine if it were your son or daughter and you watched them every day struggle to have the strength to do sustain life.
10/09/2009  My son has been diagnosed with a mitochondrial disorder. The only treatment is supplements and medical foods. Insurance is discriminating against children like my son by not covering accepted medical treatment.
10/16/2009  I have a son with Mitochondrial disease and it would be very beneficial to our family.
10/10/2009  Audrey, 9 months old, medications required include; L-Carnitine, Coenzyme Q-10, and Vitamin B12. Esstimated monthly Cost is 150.oo.
10/09/2009  My 9 year old daughter was diagnosed with Mitochondrial Disease & Autism. To keep her Mito from progressing she must have on a daily basis CoQ10, acetyl-L carnitine, Riboflavin, & many more supplements. Monthly cost over $500.
10/12/2009  Meghan Heister (myself and son diagnosed 2 yrs, daughter showing latent signs). Ohio Co-Enzyme Q10 (x3), L-Carnitine (x1) $155 per month for CoQ10 only. We can't afford so I go without to insure our children are able to take it daily.
10/17/2009  Coenzyme Q10, L-Carnitine, and Riboflavin are just the supplements my son has to take.
10/18/2009  Please cover these things, I have a son who has mito and is 2.5 years old, we have spent 45 days in the hospital for it this year and he is currently in the hospital. These items: CoQ10, L-Carnitine, and formulas like Elecare are part of his care
10/17/2009  The supplements that I take for mito disease include CoQ10 400mg a day, Carnitor 2970mg a day, all B vitamins, vitamin E, vitamin C, biotin, alpha lipoic acid. These cost me out of pocket approximately 200.00 a month.
10/16/2009  Senator Kerry, My daughter needs her supplements to sustain her energy level just to make it through a day. The cost of this is difficult very for our family, and we need coverage for this.
10/09/2009  My 5 year old has to have several of the aboved name metabolic foods.She not only uses them to give her energy, but to sustain her life.Hundreds of dollars a month. Christmas/ Birthdays became medication payments What kid would like this for a Christmas?
10/09/2009  Coenzyme Q10, L-Carnitine, Creatine
10/09/2009  Too little is known about mitochondrial disease. It is as devasting as cancer. Those who have this horrendous disease need to have medication always with them which most can't afford
10/09/2009  I am a mitochondrial geneticist treating a few hundred children with mitochondrial disease. I prescribe these supplements to my patients. In most cases, symptoms improve, sometimes dramatically so. But, many families cannot afford to pay for them.
10/09/2009  As the California UMDF Chapter President and a parent who lost a child to mitochondrial disease, I strongly urge support of this proposed legislation to help families cope with the extensive medical impact created by these diseases.
10/09/2009  Coenzyme q10
10/09/2009  I take Co Q10, L-Carnitine, and Creatine everyday for my mitochondrial disease, all of which are extremely expensive, it's a big financial burden.
10/10/2009  Taryn Farrell
10/10/2009  I have seen firsthand the devastation that this disorder can bring upon those close to us.
10/10/2009  My nephew has mitochondrial disease and I support legislaion that mandates health care payments for his treatment. Thank you....
10/10/2009  I strongly suuport this legislation.
10/10/2009  I strongly support any legislation which mandates health care payments to cover medical foods for treatment of inborn errors of me
10/10/2009  My name is Jamie Hernandez and I live in Michigan. My son has Mitochondrial Disorder. He takes CoQ10, Riboflavin/Thiamine and Levocarnitine. About 3 to 4 Hundred dollars a month. I strongly support this legislation to cover medical foods.
10/10/2009  Stacy Gibbons Indiana L-carnitine, CoQ10
10/11/2009  I strongly support this bill. I have a son who is 9 years old with mito disease. Leigh
10/22/2009  My son has mitochondrial disease and takes CoQ10 800mg/day, levocarnitine, Vit B1, Vit B2, alpha lipoic acid, vit c and vit e. Cost is $1000 per month. I strongly support mandated coverage for supplements for inborn errors of metabolism.
10/11/2009  In support of and recognition of the devastating impact that mitochondrial disorders may have, I strongly support any legislation which mandates health care payments to cover medical foods for treatment of inborn errors of metabolism.
10/11/2009  This is a petition for a very dear friend of mine whose adopted child suffers from mitochrondrial disorder. I know that this mandate would ease some of the stress she bears every single day of her life for her child's benefit.
10/11/2009  I am signing in support of our neighbor Ali Weiderman who is battling this disease.
10/11/2009  Please support this legislation.. My daughtger needs: selenium, vitamin c, vitamin e. alpha lipoic acid, digestive enzymes, biotin, bcomplex, co enzyme q10, lcarnitine, taurine, thiamine, magnesium, zinc,
10/12/2009  Supplements required for my 9 yr. old son with MELAS: CoQ10 (ubiquinol) $30, L-Carnitine syrup $10, Arginine $25, B50 $7, multivitamin $10, Creatine $25. All of these cost each month $107. Helene Hartman - (California)
10/12/2009  I strongly support this petition.
10/12/2009  With the expense of these medical foods that can improve treatment and are necessary for life, we need help.
10/12/2009  Just as insulin is required for diabetes to sustain their quality of life, mito drugs and foods can add up to $900 a month and should be covered.
10/12/2009  L-carnitor, COQ10, Riboflavin does not cover by insurance ou family spend $200.00 every month for our daughter and never ends.
10/12/2009  My grandson takes L-Carnitine and other supplements, He needs to have a strict low-fat diet and and I strongly support any legistration health care payments to cover foods for treatment. $100 is monthly amount.
10/13/2009  I am the mother of 3 daughters who have mitochondrial disease. The cost of the foods perscribed by their medical team to help treat my 3 daughters is over $500/month . These supplements are a must to make their bodies work. Please help us!
10/13/2009  My 3 nieces and sister take Mito Cocktail almost non of which is covered by insurance. Their out of pocket cost per month is over $500 for these!
10/13/2009  I support this bill.
10/13/2009  I support this decision.
10/13/2009  I support insurance payment of this medical food
10/13/2009  tanya gorham ma. my sister takes 1500 mg a day of Q10 as perscribed by her doctor. it can run as much as 500 dollars a month depending if she can find it on sale.
10/13/2009  I agreed with the above. Michael gorham
10/14/2009  an entire family we know has mito.they're on liquid co-enzyme Q10 @ $150/bottle per person.they also take alpha lapoic acid, creatine, riboflavin, pedylite.their medicaid no longer covers "medical foods".
10/14/2009  My name is Caera Horwitz and I support this bill because I have seen a good friend of mine suffer with this debilitating disease, and know that she spends hundreds of dollars on various supplements each month in an effort to feel better.
10/14/2009  yes, i agree this should be covered by medical insurance.
10/14/2009  We have 2 sons clinically diagnosed Mitochondrial Oxidative Phosphorylation. Both take CoQ10 and riboflacin= $100. per mos. x two kids at a cost of approx. $2,400 per year for our family.
10/14/2009  I support this. Brent Gaudet Louisiana
10/14/2009  I have two sons with mito and it is extremely costly to purchase the vitamins and enzymes in the cocktail. I am in full support of this bill.
10/14/2009  My son passed away from a mitochondrial disorder (Leigh Disease) in 2007. While he was still alive, he was on compounded CoEnzyme Q-10 at approx $175.00 per month, and L-Carnitine (brand name Carnitor). insurance covered Carnitor with copay appox $20.00
10/14/2009  MCAD: all lowfat foods. Actual costs unknown.
10/14/2009  I support this.
10/14/2009  My children both take Coenzyme Q10, L-Carnitine, Riboflavin, thiamine, C, and E for their mitochondrial disease. This allows my daughter to stay in school and hold a job, and gives my more severely impacted son eye contact and basic receptive language.
10/14/2009  L-Carnitine Liquid Vitamin Supplements Fish Oil GLA w/Omega 3,6,9 Liquid Proteins All Soy Products TOTAL MONTHLY COST FOR THREE CHILDREN=$420.00 (this is with a military discount)
10/14/2009  Terrie Breedlove, Illinois (Active Duty Military Family) Riboflavin, Polycose, Ensure, glucose gel, glucose "shots" (oral liquid). Total monthly costs: Approximately $350-500.
10/14/2009  Please help families who are less fortunate and do not have medical coverage or their condition is not covered by insurance companies.
10/14/2009  My nephew has this disease. His meds cost over $400, if not for the insurance his family would be broke.
10/14/2009  Sara Moren Texas My child does not have a mitochondrial disease, but I support this legislation.
10/14/2009  Our son has a mitochondrial disease and needs to take Tishon brand Liquid Coenzyme Q10, Riboflavin and L-Carnitine. We pay $185.00 per month. We have been trying to get our insurance to cover the Coenzyme Q10 to no avail. Please help.
10/14/2009  I support this petition
10/14/2009  Mitochondrial Disease affected my daughter. She passed away almost 3 years ago - she lived to be 2 1/2. It would have been a huge help to have these items covered!!
10/15/2009  CoEnzyme Q-10Alph Alpha Lapoic Acid Creatine Riboflavin Carnitor Pedialyte Monthly cost - about $500.00 I'm writing in support of my friend who has 3 daughters who deal with the challenges of mitochondrial disease every day.
10/15/2009  My grandaughter has Complex V mitochodrial disease and these nonprescrition meds are vital to her health. I am in full support
10/15/2009  I have already lost 1 Grandson to MCAD and have another that MUST have his medication. If he gets ill he MUST be cared for. His medication is critical to his homeostasis, no different than a diabetic. Coverage for meds. are essential.
10/15/2009  Insurance should cover what is necessary for life.
10/15/2009  Ashley DiLorenzo, Georgia, CoQ10, Riboflavin, ALA = $200/month
10/15/2009  Im a signing this to help one of our dear freinds BRADEN BROWN!!! Please pass this bill so his family can get him the help he needs!!
10/15/2009  Biotin (150 mg/day), cost = $240/month B-vitamin supplement, cost = $20/month Please note: insurance companies that currently cover mito cocktails may use legislation that does not include them to exclude families who are already receiving that benefit.
10/15/2009  It is vital that Mito cocktails be covered under insruance for these families, ,they are under tremendous financial burden vidya krishnamurthy MD
10/15/2009  While my family is not impacted by the devastaing effects of struggling with a family member who suffers from a disorder such as this, I STRONGLY support this effort and hope our U.S. Congress concurs by passing this important, overdue legislation.
10/15/2009  Please support our request.
10/15/2009  Cara, Stephen, and Angelina Waller, Wisconsin. We need L-Carnitine, Coenzyme Q10, Riboflavin, Thiamine, Alpha Lipoic Acid. Cost to us per month approximately $300, as the carnitine is covered by insurance.
10/15/2009  Not only is this disease devastating in terms of diagnosis, treatment, and prognosis, but it is also financially devastating. Please support this important legislation to help ease the burden of at least an aspect of this disease.
10/15/2009  I strongly support any legislation which mandates health care payments to cover medical foods for treatment of inborn errors of metabolism, should be regarded as equal to, and covered to the same extent as, medications critical to life.
10/15/2009  My 2 year old daugher is 100% G-tube feed and is a mito kid. In addition to her medication she also requires the following supplements: CoQ10, AquaDEKs, B-50
10/15/2009  This is a must.
10/15/2009  I wish to support this bill.
10/15/2009  I strongly support legislation to cover medical foods for treatment of inborn errors of metabolism. These should be considered as medications critical to life.
10/15/2009  My daughter is suspected IEM, current dx is Cerebral Palsy. She has a g-button and is on Elecare and Benecalorie. This, along with the needed supplies, costs us approximately $500.00 per month (in addition to insurance).
10/15/2009  Diane Belliveau 2113 Antone Street Austin, Tx 78723 Mom of 5 year old boy Kaeden who requires the use of Cyto-Q (Ubiquinol) on a daily basis at a current cost of $135.00/month
10/15/2009  These supplements should be covered by insurance to help with the expense. My three grandchildren all have this disorder and the financial burden is extensive.
10/16/2009  As grandparents of three family members with mitochondrial disorders, we would support any legislation which would mandate health care payments to cover medical foods for such treatments.
10/16/2009  We desperately need insurance coverage on these supplements. Our current perscription coverage doesn't inlcude the cost of any of these life saving supplements.
10/16/2009  Without the Mito cocktail, my son would not be appreciating the quality of life that he has now.
10/16/2009  Our daughter, Stephanie, has been diagnosed with mitochondrial disease and her symptoms are GREATLY reduced by taking 400 mgs per day of Co-Q-10 prescribed by her physician at Riley's Children's Hospital. The cost is prohibitive for us.
10/16/2009  My daughter Emily, aged 13 requires that we spend over $600/month on non-covered life saving supplements due to her unlucky lot in life in being born with a Mitochondrial Disorder.
10/16/2009  Please get this billl passed my grandchildren have this terrible disease and the food to alleviate it is very expensive.
10/16/2009  my son is 18 mths old and is improving with the use of coq10 and l carnitine
10/16/2009  My name is Megan Ong (IL). I require CoQ10, L-Carnitine, and Riboflavin so that I can prevent progression and to reduce symptoms. W/o treatment, I am bedbound and unable to feed myself. With treatment I am able to attend college. The cost is ~$100/month.
10/17/2009  my granddaughter died from this disease, and I would like to see that , that wasn't in vein,
10/17/2009  my grandnephew needs these vital items so he can live as normal a life as possible.
10/17/2009  My grand-niece has this disease.i support all funding for research and aid to the families affected.
10/17/2009  Please take into consideration the lives that this legislation can save and the better quality of life children will have as a result.
10/17/2009  My child does not use any of these supplements but I still value the need for this to be included on the bill.
10/17/2009  I support this measure!
10/17/2009  My son is 2 years old and has been diagnosed with a mitochondrial disease. This decision will have a lifelong impact on him.
10/17/2009  My grandson has improved with the use of coenzyme Q10 and would like to see this and others approved to be covered. Julianne Poetto
10/17/2009  Laura Vanchiere Pearland, Texas My daughter Anna Beth has mitochondrial DNA disorder and to help with this disease, she takes the following: Cyto-Q Coenzyme Q10), Folic Acid, Levo Carnitine and vitamine B2. We spend $150 a month for these supplements
10/17/2009  My son Joey takes 200mg of Coenzyme Q10, 100 mg of Riboflavin, 50 mg of thiamine and 2000 ul of D-3. The monthly cost is approx. $45. He is only 9 and newly diagnosed. Each time we go something new is added
10/17/2009  Our 6-1/2 yr old daughter exists on a medical food for her sole source of nutrition and for her continued survival. The cost for this medical food is disgraceful! We may not have a roof over our heads next year. Please mandate coverage.
10/18/2009  Pamela Parker California Semi-elemental formula... Peptamen Junior Vanilla Monthly cost out of our pocket is is approximately $1050.00.
10/18/2009  My daughter will soon be eliminating ALL foods for an extended period of time in hopes of identifying the foods that are causing the destruction of her stomach. The Elecare is essential for her life.
10/18/2009  Kids should get the nutrition they need for their medical conditions!
10/18/2009  I support this on behalf of my grandson who is undiagnosed.
10/18/2009  I feel this is a very important piece of legislation. Having a child with severe food allergies has made me aware of the hardships to families dealing with this disorder as well as an Eosinophilic Gastro Intestinal Disorder, such as EE.
10/18/2009  We have provided supplements for our son along with specialist visits for 9 years because the ins. co will not pay. i.e. CoQ10, Zinc, Vit A,B&D, lcarnitine, l tyrosine, fish oil.These are necessary for him to be functional.
10/18/2009  neocate
10/18/2009  I support this on behalf of my nephew who is undiagnosed.
10/18/2009  Please mandate coverage for Medical Foods. Our daughter survives because of these medical foods. She uses an enteral formula and will need other supplements.
10/18/2009  I strongly support any legislation which mandates health care payments to cover medical foods for treatment. We current take L-carnitine.
10/19/2009  pku
10/19/2009  Our Granddaughter will not survive without medical food and the costs are more than we can handle
10/19/2009  . The Medical Foods ordered by the metabolic medical team for an individual with an inborn error of metabolism, such as Coenzyme Q10, L-Carnitine, Riboflavin, creatine, thiamine and other supplements, should be regarded as equal to, and covered to the sam
10/19/2009  We had a baby great granddaughter, 10 months old pass away from this diseases a couple years ago.
10/19/2009  We support this registration. My son has an egid. nEOCATE AND OTHER ELEMENTAL FORMULAS ARE NECESSARY TO SUSTAIN LIFE FOR OUR CHILDREN. PLEASE COVER THEM. -John Dodge (Aidan's daddy) Vermont, usa
10/19/2009  Please support mandated health care payments to cover medical foods! These are extremely expensive and many children need them to survive.
10/19/2009  My friend's 6-1/2 yr old daughter exists on a medical food for her sole source of nutrition and for her continued survival. The cost for this medical food is disgraceful! They may not have a roof over our heads next year. Please mandate coverage
10/19/2009  This legislation can help many children get the proper medical foods that are not affordable under the current program. I am for this bill and I hope that we have the support of your office. This bill will have a great impact on many families, Thanks
10/19/2009  My son is currently on Elecare and it is his soul support of nutrition. He is now 2 years old. Had it not been for this formula my son would not be the healthy, thriving boy that he is now. Please support this legislation.
10/19/2009  My daughter has VLCAD and takes an L-Carnitine supplement and also has a special formula called Portagen. It is very expensive and is a matter of life and death if we run out. This should be covered by my insurance however it is not.
10/19/2009  L-Carnitine $8/mo MCT oil $17/mo EFA oil $5/mo
10/19/2009  I suffer from EG and possibly EOS disease. The Mito sometimes only being discovered AFTER the diagnosis of Eos. Someday it will directly affect me or my family as well. To survive on these supplements and I'm on a fixed income, I couldn't afford to live!
10/19/2009  Please support this legislation and expand coverage to include eosinophilic diseases. The cost of elemental formulas are $50/can, which can mean more than $1,000 a month. Insurance companies should cover lifesaving medical food.
10/19/2009  As a neonatal nurse practitioner, I am introduced to these families as their newborns are being diagnosed on the brink of death. It is only by the regulation of carbohydrates, fats and protiens along with other metabolic elements that these children live
10/19/2009  medical food please federally mandate
10/19/2009  Shannon Mann
10/19/2009  EO 28 splash. a medical food for children over the age of 1 that have Gastrointestinal tract disorders
10/19/2009  ribioflavin - $10
10/19/2009  Our son requires numerous medications every month totalling hundreds of dollars out of pocket (not covered by insurance).
10/19/2009  Robert Sandler, Maryland, numerous compounded medications totalling hundreds of dollars of rejected insurance claims.
10/19/2009  I support health care supplements for all patients with Mitachondial disorders.
10/19/2009  My son is now 15 yrs old. In the first years of his life, his formula or supplements were not covered. Rejected insurance claims for Portagen formula and MCT oil.
10/19/2009  My son's MCT oil is not covered by our insurance. Their reasoning is that it is a "nutritional supplement and not his soul source of nutrition". He would have no energy or quality of life without the oil.
10/20/2009  I support it!!!
10/20/2009  My name is Christine Roach in New Hampshire. My 3 1/2 yr old son requires Neocate EO28 Splash elemental formula as his sole source of nutrition. This formula costs upward of 1200.00 a month and is ever increasing as he grows and nutritional needs increa
10/20/2009  My daughter is required to take Coenzyme Q 10, Carnitine, Riboflavin, Thiamine, and Vitamin C in high doses for her mitochondrial disorder
10/20/2009  Pregestimil $160/month
10/20/2009  Please help.
10/20/2009  I have two children with mitochondrial diseases and the cost is extensive! There food and medicines ordered by the metabolic team is not only for the health of our children but critical for them to continue living, LITERALLY!
10/20/2009  Patti DeMuri Wisconsin
10/20/2009  My 6 mo. old son has VLCAD. He is on a medicated infant formula and will soon be a C7 oil. The formula cost $32 a can and he goes through 3 cans a week. I am in support of this legisaltion that would mandate coverage for needed supplements.
10/20/2009  Times are tough and families with children with special needs have enough to worry about, please do not burden them further with your budget concerns!
10/20/2009  My grandson was diagnosed with VLCADD and his formual is a mixture of lipistart and Good Start, each can cost $30.00 and Lipistart comes directly from the manufacturer at this time. Please support this is is life threatening
10/20/2009  My name is Erianna Martineau. With our insurance we spend 20 dollars a month on L-carnatine for our Mcad baby. The doctors tell us the dosage will increase with age so her prescription cost will as well.
10/20/2009  Carnitine, MCT oil, DHA
10/20/2009  Medicines such as Carnatine, MCT oil and DHA that our daughter needs because of VLCAD are not covered by insurance .
10/20/2009  My loved one has mitochondrial disease and takes CoQ10 and levocarnitine, which are extremely expensive and medically necessary, but not covered by insurance. Please help.
10/22/2009  Please support mandated coverage of medically necessary supplements and medical foods for patients with mitochondrial disease.
10/20/2009  In support of and recognition of the devastating impact that mitochondrial disorders may have upon a child, adult or family, I strongly support any legislation which mandates health care payments to cover medical foods for treatment.
10/20/2009  suppliments are expensive
10/20/2009  As an adult with mitochondrial disease, I take supplements to help my disease symptoms. These include: CoQ10, creatine, L-carnitine, and leuvorin. The cost in approx $1200 per month.
10/21/2009  coenzyme Q10 $30-40 Taurine $30 Glucose gels/tablets $20 Differential between foods used by non-FOD families and FOD food needs - $300 per month. Limited to 15 grams of fat per day; most family/budget-friendly foods are 15 grams or more per *serving.*
10/23/2009  Treatments for inborn errors of metabolism *must* be treated as required, medical expenses and covered by health insurers. The alternative is catastrophically costly medical crises and permanent damage to patients.
10/21/2009  My 2 1/2 year old child depends upon this formula. He drinks Neocate formula, and it costs over $1,500.00 per month in formula alone, not counting Dr. appointments. Please support this legislation!
10/21/2009  My child takes the following medically necessary supplements due to his mitochondrial disease: CoQ10, motillium, levocarnitine. These are very expensive and should be covered by medical insurances. Please help.
10/21/2009  I am in support of this legislation for insurance for people with this disorder.
10/22/2009  My adult son is diagnosed with mitochondrial disease and takes the following medically necessary supplements (which have improved his condition): CoQ10, L-carnitine, creatine, leuvorin. Please mandage coverage for these medications.
10/22/2009  My daughter takes CoQ10, which is medically necessary due to her mitochondrial disease. I support legislation which would mandate coverage for needed supplements and medical foods for those with mitochondrial disease and other metabolic disorders.
10/22/2009  My daughter has mito and takes CoQ10, which costs our family about $150 per month. Please mandate coverage for medically necessary supplements and medical foods for mitochondrial disease and other metabolic diseases.
10/22/2009  My grandchild has mitochondrial disease and requires medically necessary supplements that very expensive. I support legislation that would mandate coverage of these supplements for mito patients such as my grandchild.
10/22/2009  My son has mitochondrial disease and needs medically necessary CoQ10 and other supplements which are very expensive and not covered by insurance. I support mandated coverage of medical foods and supplements for mito patients.
10/22/2009  Please support my patients. They cannot do this alone.
10/22/2009  Please support mitochondrial disease patients.
10/22/2009  I agree with this statement. Mito patients should have their medically necessary supplements covered.
10/22/2009  Please support my family member with mitochondrial disease by mandating coverage for their mito supplements including CoQ10. This is a financial burden to the family and help is needed.
10/22/2009  Mito patients need this insurance coverage. Please help.
10/22/2009  I am supporting this for my friend's daughter, Hannahleigh Kite-Dillon
10/22/2009  I am a pediatric nurse at Albany Medical Center and I have cared for a number of Mitochondrial patients. The cost of these medications need to be covered to give these children the care they need.
10/22/2009  Mito patients need this medically necessary supplements and they should be covered medical expenses. I support legislation that would federally mandate this coverage.
10/22/2009  My dear friends are paying $1000 monthly out-of-pocket for medically necessary supplements for their two daughters with mitochondrial disease. Please help.
10/22/2009  My dear friends are paying $1000 monthly out-of-pocket for medically necessary supplements for their two daughters with mitochondrial disease. Please help.
10/22/2009  Please mandate coverage for medical supplements for mitochondrial and other metabolic disorders.
10/22/2009  Signed in support of family friends who pay $1000/month for non-covered supplements including CoQ10 for their twin daughters with mitochondrial disease. Please help.
10/22/2009  My daughter has mitochondrial disease and we pay $400/month out-of-pocket for the medically necessary CoQ10 supplement taht she takes. Please help.
10/22/2009  I support this effort on behalf of family friends who pay more than $400/month for their child's CoQ10 that she takes for her mitochondrial disease. Medically necessary medical foods and supplements should be covered expenses.
10/22/2009  Please help families pay for their children's medicine. I support this cause on behalf of family friends paying $400+ per month for their mito child's CoQ10 supplement.
10/22/2009  My friend spends $400/mo on her daughter's CoQ10 supplementation which is needed due to her mitochondrial disease. Please require insurance companies and medicaid to assist in paying for these medically necessary medications for mito patients.
10/22/2009  CoQ10 required by friend with mito disease costs more than $400 per month. Financial burden is very stressful to hard-working parents and they should receive help from their insurance company as well as medicaid.
10/22/2009  Signed in support of family friends who pay $200+ per month for their son's mitochondrial disease supplements, including CoQ10, L-carnitine, riboflavin, omega3, vit E, vit C, and probiotics.
10/22/2009  Signed in support of dear family friends who pay $200+ per month for their son's mitochondrial disease supplements, including CoQ10, L-carnitine, riboflavin, omega3, vit E, vit C, and probiotics. Please help families afford their children's medicine.
10/22/2009  Please help my next door neighbor's grandchild who is diagnosed with mito. His family pays more than $200/month for medically necessary supplements, including CoQ10, l-carnitine, riboflavin, omega 3, vitamins E & C, probiotics.
10/22/2009  Friend of mito family who pays $200/month for their mito child's supplements. These include CoQ10, riboflavin, L-carnitine, omega 3, vitamin E, vitamin C, and probiotics. Please help them and the many others like them.
10/22/2009  My son has mitochondrial disease and takes CoQ10, L-carnitine, riboflavin, Omega 3, vitamin E, vitamin C, probiotics as medically necessary supplements prescribed by his doctor. These cost $200/month. Please help.
10/22/2009  Please help us afford my son's medically necessary supplements for his mito disease which cost more than $200 per month: CoQ10, L-carnitine, riboflavin, omega 3, vit e, vit c, and probiotics.
10/22/2009  I am a family member of a mito patient who takes CoQ10 to help his disease. Please pass this legislation to help mito families afford their needed medications.
10/22/2009  My daughter has mitochondrial disease and takes CoQ10 as prescribed by her doctor. This expense is financially burdensome to families and should be covered by insurance and medicaid, as is other needed medications.
10/22/2009  I am a family member of a mito patient who needs their medically necessary supplements including CoQ10. Please mandate coverage.
10/22/2009  I am a friend of a mito child. Medically necessary supplements and medical foods should be covered by insurance and medicaid. Please help.
10/22/2009  Friend of a mito child who requires CoQ10 and other medically neccesary supplements. I support this effort.
10/22/2009  I am a friend of a family with a child diagnsed with mitochondrial disease. The mito supplements that their child needs are expensive and include CoQ10. Please help mito families afford needed medicine.
10/22/2009  Friends have child with mito disease who needs CoQ10. These needed supplements should be treated in the same manner as medically necessary medications. Please help.
10/22/2009  Family member is diagnosed with mitochondrial disease and takes CoQ10 which is quite costly. Please help.
10/22/2009  On behalf of my family member with mitochondrial disease who requires medically necessary supplements, including CoQ10, l-carnitine and others, please help families afford these medications.
10/22/2009  Please help my family member with mitochondrial disease who takes CoQ10 and other medically necessary supplements to stabilize the disease. These are costly and mito families are burdened with excessive expense.
10/22/2009  I am a family member of a mito-affected individual. Please mandate coverage for the medically necessary supplements (such as CoQ10 and others) and medical foods needed by mitochondrial disease patients.
10/22/2009  I have a family member diagnosed with mitochondrial disease who needs medically necessary supplements including CoQ10. These are expensive and the family needs financial relief from the burden of bearing this cost alone.
10/22/2009  Family member of mito patient. I support this legislation for coverage of CoQ10 and other necessary mito supplements. Please help.
10/22/2009  My family member has mitochondrial disease and depends on CoQ10, l-carnitine and other supplements. These are costly and should be covered as insulin is for diabetics.
10/22/2009  I support on behalf of family member diagnosed with mito who requires CoQ10. Please help.
10/22/2009  My family member is diagnosed with mito and needs supplements, including CoQ10 and levocarnitine. These medications should be covered as other medications are.
10/22/2009  Disorder: LCHADD L-Carnitine (~$150/month) Biotin ($15/month) Polycose: ($48/month) Total: $213/month
09/24/2010  Coenzyme Q10 and other supplements, over $250 per month.
10/22/2009  I strongly support any legislation which mandates health care payments to cover medical foods for treatment of inborn errors of metabolism, including organic acidemias.
10/22/2009  I support mandated coverage of supplements and medical foods for mitochondrial disease on behalf of an mito-affected family member.
10/22/2009  Our daughter was just diagnosised.. I am told her meds will run us about 600.00/ month...No idea how we will pay for this . Coenzyme Q10, L-Carnitine, Riboflavin, creatine, thiamne, B12, Vit. C- Do we have a choice though?
10/22/2009  Former MA resident. My son has mitochondrial disease and we pay $1000/mo for his needed supplements: CoQ10, levocarnitine, B1, B2, Alpha Lipoic Acid, Vit C, Vit E. I strongly support of this measure.
10/22/2009  I support this effort.
10/22/2009  I have a family member diagnosed with mitochondrial disease and support this measure.
10/22/2009  I have a family member who is diagnosed with mitochondrial disease and requires medically necessary supplements including CoQ10. I support this cause.
10/22/2009  Family member with mitochondrial disease and support this action due to the high monthly cost to the family.
10/22/2009  I support this measure due to the monthly cost to mito families for medically necessary supplements. These products should be covered at the same level as other medications.
10/22/2009  I support this effort due to the high monthly cost of needed mito supplements. Please help families by mandating coverage.
10/22/2009  Coenzyme Q10 $115.00 a month
10/22/2009  Monthly cost is too high for families to meet by themselves.
10/22/2009  Mitochondrial patients need these supplements and the high monthly cost makes it difficult on many families.
10/22/2009  I support this effort due to the high monthly cost associated with needed mito supplements.
10/22/2009  My granddaughter requires a combination of three different formulas to meet her daily dietary needs. Please do whatever is necessary to ensure that no family has to go bankrupt in order to feed a child.
10/22/2009  This legislation is needed due to the high monthly cost of medically necessary supplements for mitochondrial disease patients.
10/22/2009  This legislation is needed due to the high monthly cost of medically necessary supplements for mitochondrial disease patients.
10/22/2009  I support legislation that will enable mito patients to receive their needed supplements without incurring such financial burden.
10/22/2009  My granddaughter is diagnosed with mitochondrial disease and I support this effort due to the necessity of these supplements and the high monthly cost.
10/22/2009  Mito patients need these supplements.
10/22/2009  Thank you for your support of this needed legislation for patients with mitochondrial disease and other inborn errors of metabolism.
10/22/2009  I support this legislation due to the high monthly cost to families for the medically necessary supplements for their loved ones with mito.
10/22/2009  At ~$3000/mo, we cannot affort the doctor-prescribed dosages of CoQ10 for our six immediate family members diagnosed with mito. Private insurance/secondary medicaid will not cover. NO to socialized medicine, YES to mandated supplement coverage.
10/22/2009  PLEASE cover CYTO- Coenzyme Q10 and other mito meds!. I am in a wheelchair without it. I have a masters degree and I struggle to work with my health. CytoQ is $130/week for my family. Please cover medical food.
10/23/2009  The "Mito Cocktail" is currently the only mito treatment that can improve function, quality of life, and slow disease process. Mito patients should no more have to choose between their supplements and paying the mortgage than seniors....
10/23/2009  Laura Prudhomme-Gaupp Andrew Gaupp John J. Gaupp 12047 Chester Drive Baton Rouge, LA 70810 over 18, 3 affected family members and spend $1500.oo per month on supplements including: CoQ10, Carnitor, B2, Creatine, Magnesium,Melatonin, Arginine
10/23/2009  My nephew requires a special low-protein diet which is extremely expensive. He needs this special food so that he will not become mentally impared. How can the insurance co deny this request?
10/23/2009  Diane Nielsen Washington State Supplements for child: co-enzyme Q10, selenium, vit.e, vit. c, levocarnitine (covered by ins.). Monthly cost: $50-$60.
10/23/2009  Christa Law Massachusettes L-Carnitine supplement
10/23/2009  L-carnitine
10/24/2009  COQ10, L-carnitine, Riboflavin & Creatine SO many families like mine would benefit!!! Thank-you
10/24/2009  As a caregiver to a child in the family with a metabolic disorder I am joining this petition. Without these formulas to keep them healthy there would be so many more problems to deal with. We use propimex-2 for MMA Cbl A from Ross metabolics
10/24/2009  Even though CoQ10, L-Carnitime, Riboflavin, creatine, thiamine and other supplements are sold without a prescription, they should be covered by insurance when prescribed by a physician.
10/26/2009  My 4 yr old son Kieran has long chain fatty acid oxidation disorder (LCHAD) that requires him to consume 2 packets of MCT Pro-cal daily. This is not covered by our insurer (Medco) and is a heavy expense at $180 per month. David Whitney, Westminster, CA
10/27/2009  Tami Guthrie, VA - Neocate Jr. for EE - $1,200/month
10/29/2009  Between my Wife & daughter we spend over $200 a month.They have mitochondrial myopathy.
10/31/2009  my daughter has mitochondrial disease and she takes lcarnitine and coq10 and our insurance is not covering it.we about 300.00 dollars a month just for her supplements.
11/05/2009  Co Q10, L-Carnitine, Riboflavin, creatine, thiamine are used now and more may be added.
11/06/2009  Please support funding to cover medical foods.
11/06/2009  Also Ketocal (enteral feeding supplement powder).
11/30/2009  Having a child that has passed away from this horrible disease and seeing the cost of vitamins for her, myself and family, this should be covered as other medication are. Thx.
11/22/2009  these things need to be covered. they are medical treatment.
11/23/2009  Greta is on CoQ10 and L-Qarnitine
01/17/2010  I have a 10 Year old daughter with a mitochondrial dieases the medications and extra foods that she needs in so expensive i am a single mother and as for the last 4 year have been unable to work due do my daughters conditon
01/21/2010  These needs are as important as any medicine that could be required. This is a medically necessary issue.
03/01/2010  Please support supplements for care of medical conditions
09/12/2012  I have been diagosed with Mitochondrial disease and would greatly benifit from this bill being passed as my health insurance will not cover the supplements and some testing that is needed.
10/09/2009  Pass this important legislation.
05/07/2010  My daughter Lilly has inborn errors in her metabolism and takes 8 medications/supplements 3xs a day and drinks a special formula. This is a lifetime condition and as her needs grow so will the amount of supplements and formula.
04/01/2012  I know first hand how expensive Mito Cocktails are, my granddaughter has mito. These supplements should be considered the same as insulin, oxygen, and any other life sustaining medication.
05/20/2010  I take coQ10, l-carnitine, creatine, and alpha lipoic acid for my mitochondrial disorder. at a cost of approximately $200/month.
05/20/2010  My son takes L-Carnitine, CoQ10, Creatine, vitamin C and Vitamin E. He has mitochondrial myopathy and these substances are absolutely necessary for him to function. Without them he is in constant pain and extremely exhausted.
10/12/2009  Coenzyme Q10, L-Carnitine, Creatine, Thiamine
10/18/2009  I support this and would like language drafted.
10/17/2009  This is very important to our family - the cost is over the top and the medical foods are very necessary for people with mtiochondrial diseases.
10/16/2009  My child, aged 10, has mitochondrial encephalomyopathy with defects in complexes I and IV. He has multiple severe handicaps. He takes coenzyme Q 10, carnitor, and B vitamins at a cost of about $150/mo.
09/20/2011  My six year old daughter, Ava, takes CoQ10, levocarnitine, creatine monohydrate, riboflavin, magnesium citrate, vitamin C, vitamin K3, and alpha lipoic acid. I urge you to please support this very necessary legislation!
10/18/2009  Coenzyme Q10, L-Carnitine, Riboflavin, Creatine, Thiamine, Alpha Lipoic Acid, Magnesium
09/06/2010  I have suffered for years with symptoms related to mitochondrial disorders. I spend hundreds of dollars on gluten and pesticide non processed foods without additives and numerous supplements.
09/11/2010  Please pass this bill! Our son Tyler age 11 loves sports and is a wonderful athlete. The trouble is he gets sore easily, tired frequently and just cannot get as fast as the other kids no matter how hard he tries.
09/13/2010  dear sir, my son has a disease for which there is no cure.He is already disabled greatly by this disease.Anything that prohibits our family from getting his medical foods and other supplements due to cost or lack of coverage could shorten his life.
10/20/2009  It is VERY costly to buy these medicines in today's economy. Our son is 9 and his disease is TFP which is the rarest of the mitochondrial disease. Please cover our medical treatments for these kids.
11/11/2009  Cyto-Q, Levocarnitine, Folic Acid, Riboflavin.
10/09/2010  I am writting on behalf of others with mitochondrial diseases in my community. Many are being denied treatment because they cannot afford the supplements that insurance companies will not pay for.
10/10/2010  I strongly support any legislation which mandates health care payments to cover medical foods for treatment of inborn errors of me
10/10/2010  I strongly support any legislation which mandates health care payments to cover medical foods for treatment of inborn errors of metabolism, such as Coenzyme Q10, L-Carnitine, Riboflavin, creatine, thiamine and other supplements critical to life.
10/18/2010  Private payment of these medications can cost more than half of my income. I have "good" medical insurance (BCBS) but even with a physician's letter and prescription, they do not pay for these critical supplements.
07/21/2010  In support of and recogintion of th devastating inpact that mitochondrial disorders may have upon a child, adult, or family I strongly support any legislation which mandates health care payments to cover medical foods ordered by the metabolic medical team
09/27/2011  Coenzyme Q 10 100 mg tid Folinic Acid. 800 mcg tid Carnitine. 990 mg tid Pepcid. 25 mg qd The costs for these supplements on average is $200.00 each month.
10/20/2009  Caregiver mom to an adult mito patient son who takes CoQ10, L-carnitine, creatine, and leuvorin at a cost of approximately $1200/month.
10/12/2009  Please past this very important legislation for patients with Mitochondrail diseases. These supplements are a critical part of the care of a Mito patient.
10/22/2009  Parent of a child with mito who takes CoQ10 and levocarnitine. Out-of-pocket expense is $500/month.
07/28/2011  My name is Patti Childers from Georgia, My sons and I need Co-Q 10, L-Carnitine, Creatine, and B1 & 2 but it simply is not financially possible. The Co-Q at the appropriate dosage runs us over $1500 a month!
10/15/2009  Please consider helping us parents with the cost of mitochondrial cocktail, which is not covered by insurance. We can spend up to 200.00 a month for our daughter's supplements (all prescribed by doctor) and now they discovered that our son needs them too
08/12/2011  L-Carnitine; $20 a month and rising
09/20/2011  I am an adult mitochondrial patient living in Ma. My name is Erica Manalang and I am currently taking. CoQ10, Carnitine, amd Riboflavin. None of these is covered ny my insurance.
08/22/2011  Mother of a wonderful 6mo baby boy. He currently takes 5 medicines a day which are Coenzyme Q10, L-Carnitine, Riboflavin, Polycose, Multi Vitamin w/ Iron. Costing over $50 per month, plus all Co-pays. These are life to him not just a vitamin.
09/01/2011  My son requires a combination of the following: Co Q10, L-Carnitine, Riboflavin, Creatine and Alpha Lipoic Acid at a cost of $230 per month for mito along with other supplements for issues due to autism
08/31/2011  Coenzyme Q10 $25 a month Roboflavin $12 a month Vitamin E $15 a month Vitamin C $10 a month
09/20/2011  Karen Perkins Clifton Heights, PA We are a middle class family who struggle to get by. It would make the world of difference if we didn't have to pay out of pocket for these necessary vitamins to help energize our son Kevin who has mito disease.
09/20/2011  MCT oil Thiamine Carnitine Carbohydrate free formula Thousand of dollars out of pocket!
09/20/2011  Children in the US who suffer from this deserve the medical support they'd receive in dozens of other countries where medicine and treatment does not deplete a family's financial resources. Please, let's all support our sick kids & their families.
09/20/2011  Jennifer W. Salas, TX, my son takes Coenzyme Q10, L-Carnitine, Riboflavin, Creatine, and thiamine daily. Monthly cost is $400
09/20/2011  Ricardo Salas, my son takes CoQ10, L-Carnitine, Riboflavin, creatine, thiamine daily. The monthly cost for these supplements is $400.
09/20/2011  The 2 year old son, Charlie, of a dear friend of mine takes daily supplements (CoQ10, L-carnitine, Riboflavin, and Thiamine) and their out of pocket cost per month: over $300.
09/20/2011  I'm Emily Feikes from Texas. My best friend gives her son the following supplements everyday for his mitochondrial disease: CoQ10, L-carnitine, Riboflavin, and Thiamine at a monthly cost of over $300.
09/20/2011  My six year old daughter, Ava, takes CoQ10, levocarnitine, creatine monohydrate, riboflavin, magnesium citrate, vitamin C, vitamin K3, and alpha lipoic acid. I urge you to please support this very necessary legislation!
09/20/2011  Coenzyme Q10, L-Carnitine, Riboflavin, creatine, thiamine, B12
09/20/2011  Charlie, (friend) and his supplements taken daily (CoQ10, L-carnitine, Riboflavin, and Thiamine) and out of pocket cost per month: over $300...
09/20/2011  I am a friend of 2-year-old Charlie Salas of Dallas TX who has mitochondrial disease. His daily supplements of CoQ10, riboflavin, L-Carnitine and others cost his parents in excess of $300 per month, none of which is covered by insurance. Please help.
09/20/2011  Charlie Salas' friend, he takes the following supplements at a monthly cost of over $300: CoQ10, L-carnitine, Riboflavin, and Thiamine
09/20/2011  my friend has this disease and its costly! they spend $300/ month on supplements
09/20/2011  My dear friend has a son, Charlie, with Mitochondrial Disease. He recieves, on a daily basis, CoQ10, L-carnitine, Riboflavin and Thiamine. Her out of pocket expenses are over $300/month. Please help support these children, their parents and families!
09/20/2011  My nephew has mitochondrial disease, and his medications (CoQ10, L-carnitine, Riboflavin, and Thiamine) cost his parents over $300 each month. These medications should be covered like any other medication critical to life.
09/20/2011  My friend, Charlie, takes daily supplements (CoQ10, L-carnitine, Riboflavin, and Thiamine) out of pocket cost per month: over $300
09/20/2011  I would like request government support in covering the high cost of care associated with those of inborn errors of metabolism, specifically mitochondrial disease. Beth Stall Texas CoQ10, riboflavin, carnitine, and thiamine $>300/month
09/20/2011  My nephew Charlie Salas was born with a mitochondrial disorder and is taking the following supplements daily CoQ10, L-carnitine, Riboflavin, and Thiamine. My brother and his wife are paying over $300 a month out of pocket for his care. Thank you so much!
09/20/2011  I have had mitochondrial disease since childhood and was only recently diagnosed at age 33 years old. I take Co Q10, L-carnitine, riboflavin, thiamine, B12, B6 (pyroxidine), alpha-lipoic acid, vitamins C & E, and trimethylglycine and PQQ Total $83/mo.
09/21/2011  Supplements taken daily (CoQ10, L-carnitine, Riboflavin, and Thiamine) and our out of pocket cost per month: over $300. My grandson has Mitco. Disease.
10/16/2009  My daughter has mitochondrial disease and depends on a cocktail of vitiams and particular foods in order to sustain her energy level each day. These are a part of survival for these chidlren and should be as important as any other type of drugs
09/25/2011  I'm an aunt and this baby needs his supplements taken daily (CoQ10, L-carnitine, Riboflavin, and Thiamine) and our out of pocket cost per month: over $300... Thank you so much!!!
10/05/2011  As the parent of a teen with a debilitating mitochondrial disorder I can tell you that this is a devastating progressive illness which affects all members of the family. While there is as yet no cure for this disease, supplements can help greatly.
10/07/2011  My name is MIchelle Craver from WA State. We have an 8 year old daughter with Mito Complex 1. She takes Creatine, L-Carnitine, Vitamins C and E, Coenzyme Q10, Omega 3 blend, and a multi-vitamin. Out of pocket $250 per month.
10/20/2011  My husband kicked me to the curb because of my health issues. He left me on food stamps and penniless while he sits in the lap of luxury I cant not afford these life giving pills on disability alone. The Q10 is very expensive in its self.
01/28/2012  CoQ10 800 mg daily $200.00 a month L-canitor 6mg daily $ 140.00 a month liquid b vitamin daily $ 10.00 a month
02/01/2012  Our monthly cost is $40 after our private health insurance
03/22/2012  For now I am taking Vitam B and Vitamin c for my Mitochondrial Disease, but I go to a Mitochondrial Specialist next month whom will help me with all of this pain I am having and teach me about the Mito Coctail.
04/28/2012  My daughter has been diagnosed with a mitochondrial myopathy and has been prescribed Coenzyme Q10 and L-Carnitine. It costs us about $180 per month. She will take them for the rest of her life.
07/15/2012  Judy D. Wilkey, North Carolina ANYTHING THAT CAN BE USED TO ALLEVIATE AND/OR IMPROVE THE QUALITY OF LIFE FOR MITOCHONDRIAL SUFFERERS.
07/28/2012  We are just starting down this path. So far DHA $53.00 month and coQ10 (must be liquid due to a g-tube) $115 to $180 a month depending of it is on sale!
08/08/2012  yes, I am in support
02/20/2013  We are a family of 8 & 5 are affected by Mitochondrial disease
12/12/2012  Carrie Brown, Webb City, Missouri. Newly diagnosed and they are wanting to start the Mito cocktail. I have travel costs let alone what this cocktail is going to cost.
05/21/2013  Theodore Rock
11/29/2013  well done
11/29/2013  This is absolutely correct that insurance companies, and government programs, be required to cover these natural-orthomolecular essential treatments for inborn errors of metabolism, as they cover various treatments for diseases such as cancer.