By Anne Scheetz, M.D.

During September we observe Sickle Cell Disease (SCD) Awareness Month, with the goal of bringing greater attention to this genetic disease that affects 4,000 to 5,000 Illinoisans and 100,000 people nationwide.

A disease of red blood cells, SCD can affect many body organs, including brain, bones, heart, and lungs. Some people have few symptoms; others suffer serious complications such as childhood strokes, pneumonia, episodes of severe pain (pain crises), leg ulcers, and early death.

Under the best conditions SCD causes great suffering to severely affected people. With inadequate care, suffering is much worse.

Medical advances including medications, blood transfusions, and treatment of stroke risk, have improved symptoms, reduced organ damage, and prolonged life for many people. All can have adverse effects. Stem cell transplant appears to cure select cases, but carries a risk of death.

Known ancestry does not reliably indicate risk, so all infants should be screened; but most patients are black. Being black and being sick are risk factors for poverty; personal poverty and living in poor neighborhoods in turn adversely affect health.

People with severe forms of the disease require a lot of care. But current U.S. policy systematically erects barriers to care.

Doctors are supposed to “keep patients healthy,” and failure to do so is considered a sign of poor practice. Yet SCD is rarely curable, and many complications, including pain crises, are not preventable.

Patients who suffer pain crises require frequent hospitalizations. Yet Medicare and Illinois Medicaid penalize hospitals for readmissions.

Despite increases in insurance coverage under the Affordable Care Act, people with SCD can find themselves uninsured.

People with SCD can end up in high-deductible health plans. They may fail to get care, or suffer financial hardship, and the stress of such pressures further worsens their health.

Preauthorization requirements make it difficult for patients to get wound care products and medications on time.

Network restrictions prevent people from getting care from their doctors and hospitals of choice. Restriction to a single pharmacy, required under some health plans, prevents people from going elsewhere for out-of-stock pain medicines.

Some essential services such as dental care (important for good nutrition) are not covered for most people with SCD as for most Americans.

Health insurance plans in the U.S. are highly variable, and even the best do not cover all necessary care or provide first-dollar coverage. Insurance companies make their own determinations that certain treatments are experimental or not medically indicated, and drugs commonly used for chronic conditions may require high co-pays.

In summary, people with SCD, like people living with other chronic diseases, suffer unnecessarily from policies that prevent good care.

It doesn’t have to be this way.

Lack of health insurance, unaffordable out-of-pocket costs, network restrictions, preauthorization requirements, penalties for readmissions, all stem from our private-insurance-based system.

Under a Medicare-for-all system every resident of the U.S. would have first dollar coverage for all necessary care. Patients and their clinicians would make medical decisions. Everyone would have complete choice of hospitals, pharmacies, and other providers.

Financing by a progressive tax would transfer wealth from the top down, with the greatest benefit going to those currently most disadvantaged, including poor people, people of color, and all sick people.

Instead of creating barriers to care, we would greatly simplify administration, saving $400 billion per year—more than enough to cover the uninsured and eliminate deductibles and co-payments for all of us.

What better way to observe SCD Awareness Month than by pressing for a system that would allow us to provide the best care to people affected by this disease?

Dr. Anne Scheetz is a founding member of the Illinois Single-Payer Coalition and a leader of the Illinois chapter of Physicians for a National Health Program. She lives in Chicago.