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Texas Medicaid Patients still wait for Orkambi access

Thursday, September 24, 2015

When you're fighting CF, you're fighting time.  Every day that goes by is one more day the disease can grasp you tighter or it's one more day your body has to fight.

So, imagine how frustrating it must be for those 82 Texans on Medicaid who cannot get access to a medication that they quality for, that sits on the market and that may extend their life?

Orkambi is the second drug ever on the market that addresses the underlying cause of Cystic Fibrosis. Orkambi works for only 28% of the CF community and costs about ~$250,000/year.  Kalydeco, the first ever drug that addresses the underlying cause of CF benefits about 10-15% of the CF community and costs ~$350,000/year.

These are big price tags for health insurance policies to pay.  So, it's not surprising that states themselves would be highly concerned about the impact these medications may have on the budgets of state medicaid programs. High drug costs in all diseases are becoming an issue in our nation's healthcare.

This issue is a particular concern for those in my state, Texas.  State lawmakers are trying to do what they can to reign in the cost of new prescription drugs.  The way they are going about it, however, is having a serious impact on those in the Texas CF community.

Concerned over the issue of rising and unsustainable drug costs, the Texas legislature passed a law that went in to effect on September 1, 2015 that states that it is now the job of the Texas Legislative Board (LBB) to approve or deny paying for any new-to-market oral prescription medications that constitute significant cost to the state.

The Texas LBB is made up of four state government offices.  See board members here.  However, before the LBB can make it's decision, it must receive a letter from Texas Health and Human Services Commission giving it's analysis of the medication.  From there, the LBB has 45 days to make it's yes or no decision.  However, at any point, the LBB can stop the 45-day clock if it requests further information.

This new system has the potential of causing big delays for those with Cystic Fibrosis who are trying to beat the clock.  The delays have already begun.  Even though Orkambi was approved in July of 2015, as of today, Medicaid patients still cannot get access.

This requirement of LBB approval does not apply to patients on private insurance, only to those who are on Texas medicaid programs.  But, with a large portion of CF patients on medicaid due to the high cost of care and many adult patients' inability to stay healthy enough to work full time, this means a lot of our Texas-based CF community is and will be affected by this new law and the repercussions of what the LBB decides.

The LBB is strictly budget-oriented.  No clinical staff are a part of this budget decision.  That's why patient advocacy is so important.  Patients and families of patients, like mine, have to tell our story.  We have to talk about life with CF and the impact even small delays can have on the health of our children and those suffering from the disease.  We have to share how access to these drugs are life and death decisions.

It's important to note that Bennett cannot benefit from Orkambi. :(  While it is wonderful and has the ability to help many with CF, it cannot help Bennett.  Bennett does not have the right genetic mutations for it to work for him.  Instead, we continue to wait for a medication that would benefit him.

The CF community is a tight-nit group.  We look out for each other and fight alongside each other. Although Bennett does not directly benefit from Orkambi, I can't bare to think there are families who do qualify who cannot get it for their children.  I will continue to monitor this issue and advocate on behalf of those who need access.

The reason we have the CF meds and access to meds that we have for Bennett today is because someone advocated for them long ago.  I hope to do the same for others in the future.

To the Texas LBB, please say yes to access to Orkambi for those in Texas suffering from CF.  Waiting is simply not an option.

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