Habiba Bankston of Columbus undergoes monthly blood transfusions as part of her treatment for sickle cell disease.  Each transfusion takes about five hours, she says.

What is Bill 135. How would it help sickle cell patients

Annie J. Ross-Womack

Annie J. Ross-Womack is executive director of the Ohio Sickle Cell and Health Association. September is National Sickle Cell Awareness Month.

Sickle cell disease is an inherited, rare, painful, and debilitating disease that affects thousands of Ohioans.

Ohioans living with SCD are supported by a state program initiated in the early 1970s by legislation passed by the Ohio General Assembly. The Ohio Department of Health’s program includes a regional network of medical providers and support services whose participants administer rigorous newborn screening programs, counseling and education services, and coordination of care across the country. ‘State.

Now, Ohio lawmakers may soon pass legislation that could further help people living with SCD and others with chronic, life-threatening conditions.

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Sickle cell disease affects millions of people worldwide – approximately 100,000 in the United States. Sickle cell disease is particularly common in people whose ancestors came from sub-Saharan Africa; Spanish-speaking regions of the Western Hemisphere (South America, Caribbean and Central America); Saudi Arabia; India; and Mediterranean countries such as Turkey, Greece and Italy.

Normal and sickle red blood cells

There are several types of sickle cell disease. The specific type of sickle cell disease a person has depends on the genes inherited from their parents. People with sickle cell disease inherit genes that contain instructions, or code, for abnormal hemoglobin.

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As a result, the red blood cells cannot supply enough oxygen to the organs, tissues and bones of the body. When this happens, people living with sickle cell disease experience disabling pain. As they age, serious complications arise in the brain, heart, lungs and other vital organs.

Currently, there is no cure for sickle cell disease. Most treatments focus on relieving episodes of pain and preventing complications and unseen damage to the body. Treatments include medication and blood transfusions and sometimes even stem cell transplantation. Some cutting-edge gene therapy treatments are also underway.

Annie J. Ross-Womack is executive director of the Ohio Sickle Cell and Health Association.  September is National Sickle Cell Awareness Month.

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Medicines to manage rare and chronic diseases such as sickle cell disease and related diseases are often expensive. People with high-deductible health plans have to pay higher copays and coinsurance costs. Their medications are likely on specialist-level formularies, which increases these out-of-pocket costs.

Columbus resident Habiba Bankston is one of thousands of Ohioans living with sickle cell disease. As an adult, she transitioned from pediatric sickle cell care to adult sickle cell care. Transition services from childhood to adult treatment are a critical time for all people living with sickle cell disease.

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