Millions of Texans have rare diseases. Advocates are pushing for legislation to help them.

“The National Organization for Rare Diseases estimates that 1 in 10, or 10%, of Americans have a rare condition. So you have to start thinking, how rare is rare when you think of it cumulatively?” says Immune Deficiency Foundation President and CEO Jorey Berry.

By Laura RiceFebruary 28, 2023 10:49 am, ,

If, when you think of “the boy in the bubble,” you think of the mid-1970s movie starring John Travolta, you are likely not alone.

But Carol Ann Demaret doesn’t want people to forget that the movie was based in part on the real-life experiences of her son, David Vetter.

Vetter, born in Houston in 1971, had Severe Combined Immune Deficiency (SCID) – which meant any exposure to harmful germs could be deadly. For protection, he lived his life in a plastic enclosure. Despite efforts to help him, he died at the age of 12.

Vetter’s mother returned to Texas last week to accompany Immune Deficiency Foundation President and CEO Jorey Berry to the state Capitol, where they met with lawmakers to advocate for changes that would help people with rare diseases like Vetter had.

Berry spoke with the Texas Standard about the importance of these efforts. Listen to the interview above or read the transcript below.

This transcript has been edited lightly for clarity:

When you went to the Capitol last week with Vetter’s mother, what was your message to lawmakers?

It was an amazing experience to walk the halls of the Capitol and let Carol Ann Demaret, who is the mother of David Vetter, share her story and those of others who are affected by primary immune deficiency, in particular, SCID, as David had. We were talking to them about issues important to people with rare conditions, especially as we are on Rare Disease Day [Feb. 28, 2023]. And that was copay accumulators as well as establishing Rare Disease Advisory Councils. And we are excited that there is a copay accumulator bill that is before the Texas Legislature now.

What would that copay accumulator bill do exactly?

Copay accumulator policies don’t allow copay assistance that patients rely on from either nonprofits or pharmaceutical manufacturers to count towards their annual deductible or their out-of-pocket maximum. So it really kind of allows insurers to get paid twice, and it can leave patients with an unexpected payment due on essential, often costly medications when their assistance runs out. When you have a rare condition, your treatment can be expensive, and when your copay assistance doesn’t count towards your out-of-pocket maximums or deductibles, you can think you have met that, but not. And it creates a significant financial barrier.

What about the Rare Disease Advisory Council? I understand other states have something similar?

Twenty-four states have these councils. They’re special groups. They’re comprised of state health department officials, rare disease patients and caregivers, health care providers, even health care industry representatives. And what they do is they offer people with rare diseases a voice in state government by advising policymakers on critical issues related to health care access, to insurance coverage, to specialized treatments.

You know, I mentioned that 24 states already have them, but this is what was kind of key what we were just talking about with copay accumulator issues, introducing this valuable perspective – it can help prevent programs and policies like the one we just discussed from taking hold and causing harm to patients with rare diseases. And we hope legislation is filed soon, and we would just urge our Texas legislators to support that in addition to the copay accumulator legislation.

The nature of a rare disease is that so few people have it. There might be a tendency not to feel personally connected to what it is you and David Vetter’s mom and other Texans are trying to push here. How much resistance or apathy are you facing?

The National Organization for Rare Diseases estimates that 1 in 10, or 10%, of Americans have a rare condition. So you have to start thinking, how rare is rare when you think of it cumulatively? And especially as the Immune Deficiency Foundation, as an organization that is devoted to serving people with primary immunodeficiency, and that’s when you’re born missing part of your immune system or your immune system doesn’t function properly.

Like with David Vetter, with his Severe Combined Immunodeficiency, there is some level of empathy now since we all went through COVID. So people who didn’t understand what it is to navigate infection, fighting infection or being isolated or wearing masks, there’s a little more understanding with that for those who are immunocompromised. But it’s still our job to educate others who don’t really understand the world of rare disease.

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