Advice for dealing with today’s health crisis

by | May 28, 2020 | Opinion

For most Americans, today’s lockdowns and social distancing requirements are new. For my family, they’re what we do ev­ery flu season. That’s because our son, Hunter, has a rare con­dition known as spinal muscular atrophy (SMA), and any type of infection can quickly become life-threatening for him.

SMA is similar to ALS, also known as Lou Gehrig’s disease, but for babies. It is degenerative, stealing the ability to move and later to swallow and eventu­ally to breathe. Hunter was di­agnosed at 8 weeks of age and expected to live less than a year.

My husband and I fought to gain access to a potential treat­ment not yet approved for SMA. In our pursuit of expanded ac­cess, like compassionate use for many patients, we also have much in common with today’s COVID-19 patients, their fami­lies, and doctors, who need au­thorization to try promising, not yet approved therapies to save a life.

Thanks to Hunter’s treatment, he is now eight years old. He still faces challenges, but we are fortunate for every day with him. And the therapy we used has gone on to earn approval as a treatment for SMA, meaning it is improving more lives.[1]

This is a story I tell frequent­ly, especially to parents of chil­dren with rare diseases, because it can bring hope. I also tell it to lawmakers, most recently to members of Congress just be­fore this pandemic struck, to en­courage them to support policies accelerating biopharmaceutical development to cure all types of disease. And I’m telling it here, because our experience has spe­cific bearing on today’s national crisis.

I understand the fear many Americans are experiencing. I worry, too. Every winter, we hunker down to avoid bring­ing the flu into our home. And just like our family, millions of Texans with underlying condi­tions and those reliant on im­munosuppressive therapies are taking great measures to protect themselves from coronavirus. These measures can be frustrat­ing, depressing, isolating, and scary. Please know we will all get through this together, and call on others to help you when you need it.

And just like there was a treat­ment for Hunter—and another approved last year[2]—there will be innovations to solve this crisis. I have nothing but respect and admiration for the scientists and researchers whose work of­ten flies under the radar. They have already discovered the keys we need to beat this virus, a library of treatments, candidate drugs, and vaccine “templates” many thousands strong and built up over decades. We don’t know yet which of these pharmaceuti­cals will unlock a future beyond COVID-19, but the leading ex­perts in the field are hard at work and they will find out.

In the meantime, many peo­ple want to know what they can do, and taking action can help us overcome the sense of helplessness that is natural in the early days facing down a deadly disease. If I can recom­mend one thing, contact your elected officials, especially those in Washington, and urge them to do everything they can think of to push for pharmaceu­tical development. And tell them not to stop at the coronavirus or infectious disease. There are all sorts of illnesses out there. In fact, there are more than 7,000 rare diseases and only 5 percent of those have an approved treat­ment.

The more of them we cure, the more resilient America will be to any future epidemic and the healthier, more productive, and happier we will be every day.

For the full story, see the May 28 issue or subscribe online.

By Khrystal K. Davis, JD, She is the founder of Texas Rare Alliance and a member of the Texas Newborn Screening Advisory Committee.

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