Do you have a family member with sickle cell disease (SCD)? Have you or a family member encountered problems with getting treatment for pain associated with SCD? Well, you are not alone! And if you are Black, you’ve probably had even more trouble getting treated for your SCD.
It is estimated that 100,000 Americans have SCD. 1 out of every 365 Black or African American children is diagnosed with it. That is nearly 0.3% of the African American population. People of Middle Eastern or Hispanic origin are also susceptible to this disease but not to the same extent as the black community. About 1 out of every 16,300 Hispanic-American births. About 1 in 13 Black or African-American babies is born with the sickle cell trait (SCT).
WHAT IS THE DIFFERENCE BETWEEN SC “TRAIT” and SC “DISEASE”
People with sickle cell trait carry only one copy of the altered hemoglobin gene and rarely have any clinical symptoms related to the disease. In contrast, people with sickle cell disease carry two copies of the altered hemoglobin gene. With two copies of the altered gene, the red blood cells are destroyed rapidly and patients have chronic, severe anemia, or low hemoglobin levels.
Though less common, people with the sickle sell trait can still have symptoms of the disease. Several of the risks to persons with sickle cell trait occur when they engage in high intensity physical activity or are active at higher elevations such as mountains or unpressurized airplanes. Persons with sickle cell trait occasionally experience damage to their kidneys from sickling in sections of the kidney.
Red Blood Cells
The disease name has evolved from the sickle shape of red blood cells, which makes them stick to walls of blood vessels, in turn reducing blood flow and oxygen supply to organs. This can cause severe, often crippling, pain. The life span of SCD patients is on average 30 years less than their ‘normal’ counterparts.
You can find additional information about SCD in another article on the Patients Rising website.
RACIAL STRUGGLE WITH THE ACCESS TO SCD TREATMENT
Multiple factors affect patient access to care and treatment:
- A majority of patients with SCD are enrolled in the Medicaid health insurance program. Medicaid is run by states for those earning below the federal poverty level. However, less than 70% of doctors accept new Medicaid patients in the US.
A point to note: African Americans make up a little over 13% of the U.S. population but, according to 2018 data, they account for 34% of Medicaid enrollees.
- There is a limited number of doctors who are trained to treat SCD, especially adult patients with the disease.
- There is no formal protocol to transition SCD patients from pediatric to adult care.
- SCD patients often have a hard time convincing their health care provider about the level of pain they are experiencing. So, they end up with longer wait times before they can see a doctor or get pain medication at the emergency department (ED).
Here are some tips on preparing to visit the ED for SCD treatment, either for yourself or a family member.
- Doctors often perceive black SCD patients as drug seekers/addicts who are faking their pain. This can lead to insufficient treatment or no treatment at all because the patient may avoid seeking care to avoid the humiliation. This can further aggravate the patient’s condition.
- Discriminatory policies have resulted in structural racism and led to designated neighborhoods where minority populations can live. When combined with poverty, food insecurity, lack of adequate employment, and no or limited health insurance, challenges faced by black SCD patients seem unsurmountable.
- Treatment options are limited—the only curative options are bone marrow or stem cell transplant, which are most effective when offered at an early age. Both treatments are expensive.
- Hydroxyurea is an age-old treatment that remains at the forefront of SCD management. There is not much research investment in identifying new treatments for a disease that mainly affects minority populations in the U.S.
CHANGING THE STATE OF SICKLE CELL CARE
Education and awareness campaigns are key to addressing the problem. Only about 33% of African Americans are aware that SCD disproportionately affects their race—this is concerning and points to educational opportunities among black and other minority communities that are most at risk for SCD.
Several policy solutions have also been recommended to reduce the impact of poverty and discrimination in the context of SCD care:
- Bring together a team to support SCD patients that includes social workers, patient navigators, and psychologists along with the doctors and nurses that treat the condition
- Integrate pain-management protocols geared toward SCD patients to ensure they receive adequate care
- Develop a path for patients to safely report concerns with discrimination
- Train staff to be self-aware of any inherent racial bias and identify ways for patients to educate care staff on how racism affects their health care experiences
- Encourage diversity among health care staff—be it race or language—to promote stronger relationships with patients
Surabhi Dangi-Garimella, Ph.D. is a biologist with academic research experience, who brought her skills and knowledge to the health care communications world. She provides writing and strategic support to non-profit groups via her consultancy, SDG AdvoHealth, LLC.
From the Editor:
Some additional reading about Sickle Cell Disease: