Is the lack of access to sickle cell treatment due to discriminatory factors?An association called “The Sickle Cell Disease Association of America” gave rise to an interesting set of data about sickle cell in comparison to other genetic diseases like cystic fibrosis. Factors such as research funding, drug approvals, publications, and clinical trials proved that the funding for cystic fibrosis was nearly four times higher than sickle cell (Lancet, 2025). The interesting pull from this data was that cystic fibrosis has a significantly lower mortality rate than sickle cell. Furthermore, cystic fibrosis mortality rate has been decreasing over time while those for sickle cell have increased.So, why do we see such a lower agency for sickle cell?As many of you may already know, the genetic cause for sickle cell is the change in the amino acid of glutamate for Valine. Creating the crescent shape of blood cells that cause aggregation in blood vessels that can deprive oxygen from tissues and organs, overall causing pain (Bell, 2024). Pain tolerance is a big topic regarding minority groups, and their need for pain relief to be perceived to be, drug addiction seeking. Women who have sickle cell are even at greater risk, during pregnancy higher demands are called upon the body for oxygen and nutrients. Which can greatly clash with a sickle cell episode leading to maternal death, childbirth complications, and increased risk of stillbirths (Lancet, 2025).There is no denying the effort of gene therapy techniques being made or methods like bone marrow transplants to help treat sickle cell. However, with a disease that targets minority groups, would we ever see a budget that can be comfortable afforded for this affected population. As healthcare providers, how can we illicit justice and autonomy to patients when the price of treatment not only limits choices a provider can recommend, but bridges gaps into a patient’s quality of life?
Bell, V., Varzakas, T., Psaltopoulou, T., & Fernandes, T. (2024). Sickle cell disease update: New treatments and challenging nutritional interventions. Nutrients, 16(2), 258. https://doi.org/10.3390/nu16020258
The Lancet Haematology. (2025). Sickle cell disease: A neglected health priority. The Lancet Haematology. https://doi.org/10.1016/s2352-3026(25)00260-1
Hi Zyon! I remember learning about the impact sickle cell has on minority groups in undergrad and how those who go in for care because of the painful flare ups are discriminated against and unethically labeled as drug addicts seeking pain medication. The fact that genetic diseases such as cystic fibrosis receive more "attention" and funding than sickle cell disease is a point of concern, especially considering that the mortality rate are on the rise for sickle cell! I think as future healthcare providers, we can be socially aware to the prejudice that minority groups experience and not participate in it, if a patient comes in during a pain flare up we can be mindful of the how the disease works, assess with their condition with an educated mindset and provide them with proper pain management. As far as bridging the gaps, I was curious about what methods were feasible for healthcare providers to implement. I came across the research article that I linked below which talks about how being properly educated and practicing clinical guidelines can promote consistent quality care regardless whether a patient is a minority or not. Studies also show that when education provides a comprehensive teaching of sickle cell disease, it can improve the knowledge and understanding healthcare providers have on SCD. With this improvement of knowledge, it will hopefully lead to healthcare providers educating patients with SCD on the different financial programs that are available to help cover the cost of such an expensive treatment.
ReplyDeleteDruye, A. A., Agyare, D. F., Akoto-Buabeng, W., Zutah, J., Offei, F. O., Nabe, B., Ofori, G. O., Alhassan, A., Anumel, B. K., Cobbinah, G., Abraham, S. A., Amoadu, M., & Hagan, J. E., Jr (2024). Healthcare Professionals' Knowledge, Attitudes, and Practices in the Assessment, and Management of Sickle-Cell Disease: A Meta-Aggregative Review. Diseases (Basel, Switzerland), 12(7), 156. https://doi.org/10.3390/diseases12070156
What a great point of conversation! It really is a concerning issue that needs to be addressed. Not only do individuals face substantial physical challenges due to SCA, they also face significant financial costs due to seeking healthcare treatment like ER visits and continuous follow ups. Now it seems like amazing news that there are new gene therapies becoming available to SCA patients, however the price of these treatments are incredibly out of touch. With Cassgevy costing a cool $2.2 million and Lyfgenia costing $3.1 million (Abdelazim et al., 2025), these are not obtainable for the mass majority of individuals affected by SCA and raise ethical implications regarding accessibility. As future providers, we ought to be acutely aware of the best treatment options of SCA and advocate for more accessible treatment options.
ReplyDeleteAbdelazim, O. T. F., Sharafeldin, A. B. K., Kawari, M., Hasan, Z. A. I. Y., & Toorani, Z. A. (2025). Advances in Sickle Cell Disease Treatment: A Comparative Review of Hematopoietic Stem Cell Transplantation and Gene Therapy (Casgevy and Lyfgenia). Https://Home.Liebertpub.Com/Scd, 34(17–18), 363–373. https://doi.org/10.1177/15473287251362882