Lawmakers discussed a bill that would improve awareness, access to care, and treatment options for Oregonians suffering from sickle cell disease on Wednesday.
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Members of the House Committee on Behavioral Health and Health Care discussed House Bill 2927, which would establish a statewide steering committee on sickle cell disease. The committee would establish a statewide network of stakeholders, provide education services, and identify funding sources in relation to care for the disease.
HB 2927 would require the Oregon Health Authority (OHA) to provide social support and other services for people with sickle cell disease, maintain a webpage with resources for healthcare providers regarding care and treatment, and conduct an annual review of treatment plans and services for people with the disease who are eligible for medical assistance under the Oregon Health Plan (OHP).
Bill sponsor Rep. Travis Nelson (D-Portland), a registered nurse, said one out of every 365 African Americans are born with sickle cell disease, and a person with sickle cell has a drastically lower life expectancy of just 40 years, as opposed to the national average of 75 years.
“As a nurse and a Black man, I care deeply for those impacted by sickle cell disease,” Nelson said. “Many people living with sickle cell are underserved, and receive care mostly in emergency room settings, which is not an ideal treatment place for this chronic disease. Each year in Oregon, between 159 and 180 children are born with sickle cell. And on the West Coast, Oregon’s numbers are only surpassed by Washington.”
The steering committee created by HB 2927 and the OHA would study ways to provide outreach and improve access to healthcare, social support, and other services for people with the disease. They would consider establishing a sickle cell disease registry, and whether medications, treatments, and services covered by the OHP are sufficient.
“This disease is pervasive, and we need to elevate research and treatment options, rather than letting people suffer in silence,” Nelson said. “Many people struggle with the economic weight that comes with sickle cell, as well as its effect on their mental health. Many people suffer in isolation, and undiagnosed, not knowing of the resources that are available to them. We need a more coordinated effort to address this disease as it affects all areas of a person’s life, not just their physical health. A statewide steering committee on sickle cell disease would do just that.”
Pastor Marcia Taylor, executive director and CEO for the Sickle Cell Anemia Foundation of Oregon (SCAFO), testified in support of HB 2927. She said many doctors and care providers have never seen or treated a patient with sickle cell or have treated very few sickle cell patients, and are unaware of many new treatments that lessen hospital stays for sickle cell patients.
“And sometimes they’re hesitant to introduce new medications,” Taylor said. “Education is the key to helping promote sensitivity and improve access to care for our clients, who are often mistaken for drug addicts. One of the primary reasons is because they’ve been on pain medication most of their lives, and when they go into the emergency room, they know what medications help them, and they know the dosages. This is one of the reasons we really need the steering committee to help us.”
SCAFO is working to obtain a van that would visit rural areas to provide basic care to clients to eliminate long travel hours to the Portland metro area for follow-up care and basic checkups, Taylor said.
“We provide seminars and disseminate information and education, and this is much needed in rural areas,” she said.
Leslie Gregory, a physician assistant and the founder of Right To Health, said she has cared for many patients with chronic pain syndromes who are in legitimate need of chronic pain medication, but were not able to acquire it due to stigmas around the opioid overdose epidemic.
“When political mandates and clinical guidelines are at odds, the patients are the ones who suffer, particularly marginalized individuals whose lives depend on appropriate medication management,” Gregory said. “A statewide committee would drive systemic change to eliminate this kind of suffering.”
If HB 2927 becomes law, the steering committee would submit its research findings to legislators no later than June 30th, 2024. Under the proposal, health benefit plans would be required to cover fertility preservation for people with sickle cell disease as well. No action was taken on the bill on Wednesday.