By Ronnie Peterson

As a civic and community leader in the great state of Michigan, I have spent the last four decades deeply committed to improving the health and wellbeing of our citizens. Every day Michigan residents need a champion, especially in our African American community.

Today, I’m shining a light on one of our most marginalized communities: the nearly 3,000 of us living with sickle cell disease. Sickle cell disease is a gruesome, inherited blood disorder that causes unbearable and unpredictable chronic pain.

On the laundry list of other side effects, patients experience a high risk of stroke, kidney disease, anemia, vision problems and a life expectancy 30 years below the average American. Sickle cell disease disproportionately impacts African Americans, with one in 365 born with the disease and one in 13 carrying the trait that they could potentially pass onto their children.

Sickle cell patients have endured this horrible disease with no end in sight, but thanks to recent advancements in cell and gene-based therapies, there is hope for a cure.

Considering these new developments, I am proud that Michigan’s Legislature has hit the ground running on sickle cell disease and treatment awareness.

We were able to secure $6.7 million in the current year’s budget primarily to expand coverage of children’s special health services to include at risk adults with sickle cell. We also launched a specialty license plate for sickle cell disease awareness and fundraising.

Our work in Michigan is a critical first step to ensuring sickle cell patients receive the care that they need, but there is still so much more work to do at both the state and federal levels.

First and foremost, we need to address gaps in health care coverage. For many patients, they cannot maintain a full-time job for employer-sponsored insurance because of their severe symptoms, and they tragically do not live long enough to age into Medicare.

That leaves Medicaid as the only option for nearly half of sickle cell patients, which varies dramatically in coverage by state. It also means that patients are relying on state programs to regularly evaluate their covered options and update them to reflect new treatments, which frequently does not happen.

Systemic inequities in our healthcare system have created a lack of innovative treatment options for sickle cell patients. The disease mostly impacts marginalized communities, so it has gotten far less pharmaceutical investment and research funding than even rarer diseases like cystic fibrosis and hemophilia. Most cystic fibrosis and hemophilia patients are White.

There is also a serious shortage of healthcare providers who are knowledgeable enough to adequately treat the disease. Providers even disregard sickle cell patients as “drug-seekers,” who exaggerate their symptoms to obtain pain medication.

If we are to truly tackle this crisis, we need to go beyond just state-level action. We need the federal government to ensure that new cures and treatments will be available to all patients as soon as they hit the market.

This means investing in research and promoting the development of innovative new therapies, working with state Medicaid programs on accessibility of treatments and making sure the sickle cell community has a seat at the table for all policy changes.

The federal government should convene a taskforce of sickle cell patients, doctors, advocates and pharmaceutical leaders to advise on best practices to promote equity.

Michigan’s leaders are already on the frontlines of this fight, and I urge federal policymakers at the Department of Health and Human Services, Centers for Medicare and Medicaid Services, and the Food and Drug Administration to join us in breaking the sickle cycle.

State Rep. Ronnie Peterson, D-Ypsilanti, is serving his third term in the Michigan House of Representatives representing the 54th House District.