State by State Medicaid Programs Continue to Stop Covering Sucraid!

I consider my children extremely fortunate to have qualified for state-funded insurance over the past several years. Until recently, I took their coverage for granted, thus their ability to receive Sucraid. This also involved my naive assumption that all children in the United States could also receive Sucraid if they had state-funded Medicaid, or Medical/Healthy Families (California.)

With that, I would like to first apologize for not digging deeper into this issue. Next, I would like to express my desire to partner with Curascript (the pharmacy that distributes Sucraid), QOL Medical (Sucraid manufacturer), Medicaid and other state-funded insurance programs and NORD (National Organization of Rare Disorders) to create a process that allows all children with CSID to receive Sucraid for little or no cost.

Earlier today I received a phone call from Curascript informing me that as of January 1, 2012 Idaho Medicad was no longer covering Sucraid. My oldest daughter, Elora, is attending college in North Idaho and is highly dependant on Sucraid to ensure proper digestion of her very limited food choices on campus. Her current Sucraid bottle expired weeks ago, as she has been with our family for the holidays. Over a week ago I had arranged for her new Sucraid to arrive at her dorm today.

Since my desire is to partner with the above organizations, I want to avoid criticism. However, I know that I am not the only parent extremely frustrated at this whole process and the fact it leaves great gaps in the availability of Sucraid for our children.

1) It would have been an act of courtesy and compassion to have a minimum of two weeks notice from the Idaho Department of Health and Welfare informing me that they would no longer be covering Sucraid as of the beginning of this year.

2) This is not the first time that I receive a phone call from Curascript on the day of an already scheduled delivery to inform me that they could not deliver Sucraid. Again, when I place the refill order, any problems regarding shipping or insurance coverage should be addressed.

3) I believe the main problem here is the high cost of Sucraid. Both of my children receive two bottles of Sucraid per month at over $3000 each at my last assessment. That is $12,000 per month for medication! No wonder the insurance companies, state-funded or otherwise, are having an issue with continuing coverage. From my rough estimates based on personal contact with parents of children with CSID, the rate of diagnosis is tripling every few months. The cost of Sucraid has also tripled since my son’s diagnosis in 2005. Whatever happened to a bulk discount? If the demand for Sucraid is increasing at such a rate, wouldn’t the overall cost to the manufacturer be decreasing, instead of increasing? I understand the concept of supply and demand, but these prices are outrageous and directly contributing to reducing availability of Sucraid for our children.

4) I do not think it is a coincidence that the reduction in coverage for Sucraid coincides with the national health reform laws about to take place. My hunch is that the government is somehow trying to offset healthcare costs by dropping expensive drugs. Call me ignorant, but isn’t the whole point of “health care reform” to make sure those who need health coverage and medication the most, continue to receive it? Obviously there is something larger at hand here, and it is not in the best interest of our children and their future health.

The phone call from Curascript led to transferring me to a representative for NORD’s Patient Assistance Program. I must still go through the process myself, but the next step is applying for assistance for my daughter in Idaho. The program pays for 3 refills of Sucraid while they work on finding alternative funding to pay for Sucraid until they can overturn the Medicaid non-coverage policy.

At this time, the assistant program is working with Wisconsin, North Carolina, Georgia and Texas to overturn their Medicaid non-coverage policies. The representative told me that Texas is very close to being overturned and once they find success, they are confidant they can apply the same process to overturning the other state policies.

This is only the first step in a process that will hopefully end in reducing the overall cost of Sucraid and allowing all insurance companies to cover it’s cost.

If you have any further details, or have already gone through this process, please comment to this post or send me a detailed email at .


One thought on “State by State Medicaid Programs Continue to Stop Covering Sucraid!

  1. 4boysmom says:

    My child is on Texas Medicaid (he is a foster child at this time…soon to be adopted) His Sucraid is not covered but we are hoping that will be overturned soon. I will keep you informed if they get it overturned.


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