Slideshow Widget

CF Advocacy: Meeting with TX Medicaid Officials

Thursday, May 14, 2015

In January, I was asked by the Cystic Fibrosis Foundation's Public Policy department (in Bethesda, MD) to join them (in Texas) as a CF parent-advocate at a meeting in Austin with Texas state Medicaid Officials, along with several CF doctors and CF clinicians from around the state.  I always jump on a chance to to advocate for  those with CF, so I was delighted to come!


About 50% of children with Cystic Fibrosis and about 25% of adults with CF in the US are on Medicaid.  So, it's very important that those making decisions in Medicaid understand the disease, how daunting it is to just stay well and how important it is to have access to a Cystic Fibrosis Care Center.

Our lobbyist, Laura, explained at one point, "When you get cancer, everyone knows that you need to get to an accredited cancer center, like M.D. Anderson, as soon as you can. What's lesser known is when you have CF, you need to be cared for at a Cystic Fibrosis Care Center."

The CF Foundation is aware that with changing health care laws and the rise in health care cots, there is a genuine concern, for those with CF, that insurance plans will not cover their medications, exclude their CF doctors from being in-network or throw challenges in their way such as requiring prior authorizations or refusing medications without the patient trying a generic med first.

This is why the CF Foundation set up this meeting in Texas.  They want to Medicaid to really understand the impact their decisions may have on our CF community.

CF is a very expensive disease.  But, we explained, CF is can be less expensive if we can catch bacteria before they colonize in a patient's lungs or if we can give medications quickly, before it becomes a lung exacerbation.

Our group, which included a Cystic Fibrosis Foundation representative, a Texas lobbyist who works on behalf of the Foundation (who does things like provides local and state contacts and serves as an local expert on state health laws, issues, etc.), a CF doctor, a social worker, and nurse coordinator from Texas Children's Hospital in Houston, a CF doctor from Dell Children's Hospital in Austin, a CF doctor from San Antonio and myself.

For about an hour, we explained the disease, shared why patients require so much medical care and walked through the kinds of challenges patients run into in an effort to keep themselves out of the hospital.

At one point, I was briefly given the floor to explain what Bennett goes through each day.  It was an empowering moment - to tell my story to someone who can help.

I shared about Bennett's struggles from birth and interspersed it with his daily life and care. The room was quite.  I could tell that people were intrigued.  While I shared, I no longer saw each person as a position of power, but, instead, a mom, a dad, grandfather.  The interest, surprise and concern on their faces made them real.  And I hoped that my son's story also too made CF real.  One official waited until I finished and then she asked, "how old is he again?"  I answered: five.  There was a pregnant pause.  It's hard for anyone to hear how much a five year old has to go through, and that's when he's well.

I don't know what, yet, will come from our meeting.  But, I know, on a whole, our group all felt very heard.  There was a desire from Medicaid to add more CF Centers in parts of Texas that do not have them.  I was very glad to hear such a genuine concern for patients who don't have reasonable access to a CF Center in their area (in some parts of Texas, families much drive 6 hours or even fly) to get care - and that care can require monthly doctor visits.

This interest from Medicaid to add more CF Centers prompted a discussion on what actually goes in to a CF Center.  One CF doctor explained that the CF Foundation accredits CF Care Centers and requires more than 50 patients, a CF doc who specializes in CF, a dietitian and respiratory therapist.  Also, the Center must have a lab who can provide necessary CF lab work and provide sweat tests for official diagnosis.  At the time, I had not realized just how much goes in to making a CFF-accredited CF Clinic.

And then, we talked briefly about reimbursements for doctors.  I did not realize how little reimbursement CF doctors get and how much support they must receive from the CF Clinic's hospital in order to serve their CF patients.  Several times, I heard a CF doctor explain, "I don't do it for the money, I do it because I love it."

After our meeting, we had lunch before everyone hit the road to headed back home.  I made sure to thank the CF clinicians and tell them, oh behalf of all of us CF families: we are incredibly grateful for them.  I feel this way about the Foundation, as well - which is not an entity, really.  The CF Foundation is a group of people who get paid to support families with those with CF.

Post a Comment

We love to hear from you! Please leave your comment below!