I just found about 2 weeks ago my now 1 month old daughter has PKU. With very high levels of PHE. There is one pharmacy in our city that will order the formula at $250.00 per can. I’m looking at $1500.00 a month just on formula. Not including her food when she begins to eat. Our insurance will cover $10,000.00 lifetime cap with a $500.00 deductible. I have research everywhere for funding.According to the goverment my husband makes to much for assistance. Any ideas will be appreciate. For me going back to work is not an option,we also have an austic daughter.
Can I ask where you live? Because I know that there are some states (like Wisconsin) that are required to provide formula at no cost. nBreanna
Thank-you for replying. I live in New Mexico.Our insurance (Great-West Healthcare) is coding it as medical supplies. We have a $500 deductible and a 10% co-pay as today. Before we had a $500 deductible and $10,000.00 lifetime cap in which would only gives us 7 month supply. They also treating it like a feeding tube. I was also wondering how other PKU(ers) get their formula. I been told local pharmacy and the insurance says through a home health equipment supplier.
Has your medical provider given you any advice? Is there a PKU clinic in your area? Perhaps Great-West should be coding the formula differently when processing your claims. I’ll see if I can find anything on the internet. Like Brea I live in Wisconsin and some essentials are provided by the state.
I looked for any names or numbers I could find that might be helpful to you. This is what I found:
Pediatric Metabolic/Genetic Consults Available: Dr. Susan Root, M.D., or Dr. Claire Leonard, M.D., pediatric metabolic service at UNM. Call UNM PALS line 272-2000 (Albuquerque area) or 1-888-866-7257 (Outside of Albuquerque) and ask for Pediatric Metabolic Specialist on call.
Wanda Yazzie at (505) 827-2362
New Mexico Department of Health nPublic Health Division nOffice of Epidemiology n1190 St. Francis Drive nP.O. Box 26110 nSanta Fe, NM 87502-6110
These first two are names and numbers I found in articles on the internet. But I thought it at least gave you a name. You never know they could refer you to some else who could help.
Children’s PKU Network n1520 State St., Suite 240 nSan Diego CA 92101 nPhone: 619/233-3202 nFax: 619/233-0838 nE-mail: email@example.com
http://www.pkunetwork.org This site had some helpful things. There was a crisis link. You can submit a request for help to them.
http://www.pkunews.org/support/groups.htm nThis site has many helpful links.
http://www.padow.org nThis is the PKU and Allied Disorders of Wisconsin. About 20 years ago they petitioned the stated government and now we are able to recieve formula and some other basics from the state. Maybe someone could give you tips for approaching your state representatvies.
You could look on the March of Dimes website too.
I better get back to work. Let me know if you have any success.
Thank-you for responding HappyMom and for providing the information. Addy is a patient of Dr. Susan Root. The hospital has been great working with us to get the formula where we can afford it. Its been a fight with Great-West. They are now working with us after mentaining they were violating state laws concerning PKU.
In hours spent on the internet researching PKU and trying to find funding, I found a site http://www.smileinworks.com for PKU funding. Do not know if it is worth it. I still not receive the information requested. MomofAddyangel
Good! I’m happy to hear Great-West is doing what they are supposed to now. Why do things have to be so darn expensive? How are families supposed to survive? You don’t have to respond…just rhetorical, cosmic questions.
Another way people have been successful getting their insurance companies to cover formula(the treatment) has been to illustrate how much it would cost their company to take care of your child if they are not treated(i.e. life time care of a mentally retarded individual).
I need help getting the food. My son is 13 and is on medicaid. Does anyone know any place that would take medicaid for payment on the food? Thank goodness medicaid covers the formula so we don’t have to worry about that part!! If anybody can give me any advice please let me know!
I agree totally im am on medicaid too and food stamps and i wish there was a way to pay for it by using that, but i dont know the only palces i know is cambrook foods but thats a website, so i dont think they’f take it i dont know for sure.
If anyone knows anything let us know, my daughter just turned a year and im having trouble trying to figure out what all to feed her now that she doesnt get babyfood, it would help to get the low protein foods on there too!!
Being fusturated one afternoon with being denied government assistance (once again). I called one of the state senator who has a local office to complain that New Mexico needs to open thier eyes to PKU and other metabolic disorders that there is a need from the government to help this people regardless of their income. Addy is now receiving government help. Hopefully other people can get help now and the government will look into changing their guidelines. nBrandi
Here is a website that might help people a little bit. I live in New York so I don’t have any problems with my formula or food. This link includes all the laws (up to 2006) that are in place by state regarding PKU. I hope it helps someone out.
my husband just found out Ady is covered for life under state funding and wic is to supply her formula. If helps if you fight the system to get help.
My daughter is on Phenex1 & There is a website called “NEEDYMEDS.COM” & you can get your clinic to fill out the proper paperwork. if you meet the requirements the pharmaceutical co will send you the formula at no cost, if not you may qualify for some min payment……that is also for various types of medication that you can’t afford to pay for. [/SIZE][/COLOR]
Where do you live? Are there any agencies in the state that would help? I live in Illinois and if we make under a certain amount DCSS helps with most everything for the condition.