To Address Health Inequity, Start with SCD

 

Unfortunately, there are a great deal of inequities within the healthcare system. Health inequity occurs when groups are treated differently, offered different or worse care, or have a lower quality of life simply because they are part of a marginalized group. In an opinion piece written for Stat by Ted W. Love, the president and CEO of Global Blood Therapeutics, he explains how health inequity is commonly seen in the treatment of patients with sickle cell disease (SCD). With a majority of patients being of Black descent, it is important to use medical and scientific innovation to address these inequities and begin treating all patients equally and fairly.

Health Inequity

As described in Community in Action: Pathways to Health Equity, the authors explain that:

Health inequity…arises from social, economic, environmental, and structural disparities that contribute to intergroup differences in health outcomes both within and between societies. [These] inequities are systematic differences in the opportunities groups have to achieve optimal health, leading to unfair and avoidable differences in healthcare outcomes.

Altogether, the authors from this book explain that health inequity is caused by two particular roots:

  • The unequal allocation of power and resources, which in turn creates unequal socioeconomic and environmental conditions (the social determinants of health)
  • Mechanisms which organize power and resources differently across race, class, gender and sexual orientation, and other elements of identity

Health inequity manifests in many social obstacles, such as:

  • Inadequate or unsafe housing
  • Inability to access food or water
  • Poor quality schools, workplaces, or neighborhoods
  • Income and wealth gaps

Interested in more examples of health inequity? This inequity is clear in pregnancy and birth. For example, Black women are more likely to have low-birthweight infants. The newborn mortality rate is higher in Black populations. But when treated by Black physicians, that same mortality rate is cut in half, studies show.

Health Inequity in SCD

Prior research has shown that patients with SCD typically live for 30 years less than those without SCD. However, racial inequity within healthcare means that doctors are consciously or unconsciously biased against certain patients. For example, doctors are more likely to believe that Black patients are engaged in risky behaviors or that Black patients are less likely to follow treatment routine. Thus, even before diagnosis or treatment, Black or Latinx patients face a critical difficulty in their healthcare experience.

Love argues that we must address this inequity, particularly in SCD, to move forward. Even though doctors have known the molecular basis of SCD for nearly 65 years, and treatments like Adakveo and Oxbryta exist, there is still a need for more effective treatment options. As SCD progresses, so does organ damage, pain crises, and additional detrimental symptoms. However, when patients, especially those of Black descent, are hospitalized or visit their doctors, they are not seen as patients in pain. Rather, they are sometimes viewed as seeking drugs, again presenting a critical obstacle in overcoming health inequity.

COVID-19 has heightened the importance of addressing inherent issues within our healthcare system. More so, the pandemic has taught us that healthcare innovation is needed to overcome obstacles. Thus, right now represents the ideal time to not only continue gene therapy solutions and research into SCD, but to begin talking about the care gaps and inequities built into the healthcare system.

So it’s time to address health inequity. It’s time to address racism and racist thought within this field. To overcome inequity, we must work to ensure that everyone is given the same standard of care – regardless of background.

Sickle Cell Disease (SCD)

Sickle cell disease (SCD) represents a group of inherited red blood cell disorders. Overall, sickle cell gene mutations cause SCD. Because SCD is inherited in an autosomal recessive pattern, patients must inherit one defective gene from each parent. Normally, these genes produce hemoglobin, which helps carry oxygen throughout the body. However, in patients with SCD, red blood cells are malformed, developing into a sickle shape. As a result, these malformed blood cells get caught along the walls of blood vessels, causing blockages or restricted blood flow. Symptoms, which often begin in early childhood, include:

  • Anemia
  • Fatigue
  • Jaundice (yellowing of the skin and eyes)
  • Organ (liver, brain, eyes, spleen, kidneys, heart, skin, joints, bones) damage
  • Painful swelling of the hands and feet
  • Gallstones
  • Retinal detachment and vision loss
  • Delayed growth
  • Pain crisis
  • Pulmonary hypertension (occurs in ~10% of diagnoses)
Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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