Hearing the Patient’s Voice

I sat in recently on a  panel discussion at the Foundation for Sickle Cell Disease Research meeting focused on a patient bill of rights. Among the issues raised by patients at the meeting was the inadequacy of comprehensive care. Patients typically receive comprehensive care during their pediatric years then “age out” to float among emergency rooms, internists, GPs, and hematologists. An additional challenge to all patients – whether pediatric or adult — receiving care is that by and large, hematologists often specialize in oncology and are not familiar with best practices in treatment of Sickle Cell Disease (SCD). The absence of safe and effective therapy, combined with gaps in medical care, leave patients at increased risk for acute chest syndrome, strokes, chronic pain and death.

Hematologists who do focus on SCD often recount a familiar refrain from hospital administrators who say that treating sickle cell will ultimately result in higher costs for the hospital and won’t drive revenue. Compounding these disincentives for providing comprehensive care, there are simply not enough adult hematologists to treat the sickle cell disease population. This is such an acute and commonly recognized problem that speakers at medical conferences and other sickle cell disease meetings regularly use the speaker’s platform to advertise hematology job openings at their hospital. This is met with a familiar and sympathetic chuckle from the assembled. This is not an uncommon scene at many rare disease speciality meetings.

Why is this? No clinician or administrator is deliberately seeking to make quality care less accessible to people living with sickle cell or any other rare disease. These caregivers find themselves focused on the “more pressing” issues of reimbursements, the needs of larger patient populations and diseases where the diagnostic and treatment path is clear. As I listen to the parents, wives, and partners who tell stories of the challenges they faced finding care for their love ones before they passed away, I find these explanations hollow. We are all patients at some point in our lives, and we know from experience that there is nothing “more pressing” than our health or the health of a loved one.

I expect that with more pharma and biotech companies (including our own Imara) moving into the area of sickle cell disease, more therapeutic options will become available. Perhaps along with this the medical system will increase its capacity for comprehensive care for all sickle cell patients regardless of age. We will see. There is certainly evidence of similar transformations in care such as in rheumatology, which was a sleepy field where steroids and an old chemotherapy, methotrexate, were standard of care, before immunomodulators like Enbrel came on to the market. This is years away however. What do we do now?

Thinking back to the SCD panel on a patient bill of rights, the issue that many patients wanted addressed was to be heard by care givers. To be heard they are in pain and want treatment for that pain, to be heard how they have managed through crises in the past, and to be referred to with respect. This would be a good start and the most basic of expectations.

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