Introduction: The 2022 ASTCT Tandem Meetings’ Spotlight Session on Delivering Culturally Sensitive Care: Conversations Between Patients and their Providers was organized by the Women and Underrepresented Minority (URM) Special Interest Group (SIG). Dr. Linda Burns, Scientific Director at the Center for International Blood and Marrow Transplant Research, Milwaukee, WI, and member of the ASTCT Content Committee, recently spoke with Dr. Melody Smith, SIG Co-chair, from Stanford University, who moderated the session and the three outstanding speakers – Dr. Ariel Frey-Vogel, Massachusetts General Hospital, Boston, MA; Dr. Patricia Ford, University of Pennsylvania; and Dr. Mark Walters, University of California San Francisco Benioff Children’s Hospital – for their insights into the importance of delivering culturally sensitive care to patients.
Melody Smith, MD, MS
Assistant Professor of Medicine, Division of Blood & Marrow Transplantation and Cellular Therapy
Stanford University, Stanford, CA
Q: Why did the SIG select this topic for their Spotlight Session?
A: The Women and Underrepresented Minority (URM) SIG is interested in highlighting voices and perspectives that will improve our ability to deliver culturally sensitive care to our patients. As transplanters and cell therapists, it is important to understand our patients holistically. In this way, we can more effectively collaborate with patients to develop a treatment plan that is concordant with their preferences and beliefs. This session focused on important considerations for transplant of patients who are transgender or Jehovah's Witness. We also discussed ways to deliver culturally competent care for patients with sickle cell disease.
Q: What do you believe is the key take-home message?
A: As healthcare providers, we should seek opportunities to educate ourselves on the ways in which cultural factors may help to guide and influence the care of our patients who may receive transplant or cell therapy.
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Ariel Frey-Vogel, MD, MAT
Transgender Health Program
Massachusetts General Hospital, Boston, MA
Title of Presentation: Affirming Healthcare for Transgender and Gender Diverse People
Q: How did you become interested in providing healthcare for transgender and gender diverse people and your practice at the Mass General Transgender Health Program?
A: I trained in general internal medicine and pediatrics (med-peds) and practiced primary care for 10 years. I loved primary care – and what I loved most about it was the connections I had with patients and acting as a coach to enable them to improve their health. While I was doing this, I went to a talk by a trans woman who works at my hospital, which our pediatric residency program had organized as part of our residency’s legislative advocacy curriculum. She was talking about the importance of the bathroom bill at the time (allowing people to choose the bathroom that matches their gender identity, not their sex assigned at birth), but she was also advocating for more comprehensive holistic healthcare options for trans and gender diverse people. That was my wakeup call – I realized that I didn’t know how to provide adequate care for gender diverse people and that this is a population for which healthcare and affirming providers is absolutely needed. I found the speaker after her talk and asked her how I could get involved and she told me she had been collecting names of interested people and those names turned into a working group, which turned into the MGH Transgender Health Program. I did a lot of reading, went to conferences, and shadowed experts to learn how to care for gender diverse folks – how to block puberty, how to prescribe gender affirming hormone therapy, and how to be an affirming provider overall. For me, working with gender diverse people of all ages allows me to do my favorite parts of primary care – spending time to get to know my patients, advocating for them, helping them to meet their goals, bringing family members together, doing a lot of educating – but from the perspective where the patient’s goals ARE my goals. I have the privilege of helping my patients meet their goals while also forming connections with them and helping them to see what is possible for them. At the same time, my patients come to me having done a ton of research on their own (because there are so few providers who understand this aspect of healthcare) and so I learn so much from them. It is incredibly meaningful work – and I think doing this work has made me a better advocate both within in the office as well as within my communities.
Q: Since many medical professionals completed their training years ago and may be completely unfamiliar with this topic, what type of training do you suggest?
A: It depends how engaged you want to be. For those who really want to learn in depth about caring for trans and gender diverse people, I would recommend a conference, such as:
1. Harvard’s Advancing Excellent in Transgender Health (website from last year)
https://cmeregistration.hms.harvard.edu/events/advancing-excellence-in-transgender-health-a-course-for-the-whole-care-team/event-summary-4e6ca256b91849629f575f432a1a1d06.aspx?dvce=1
2. The World Professional Association for Transgender Health Annual Conference:
https://wpath.org/
Alternatively, for those who just want to educate themselves and learn more, Fenway’s National LGBTQIA+ Health Education Center has a number of webinars which are excellent and there are some for front desk staff, providers, and the whole office. They are free, but you have to create a (free) account: https://www.lgbtqiahealtheducation.org/
Q: Is it your experience that patients and patient advocates wish to be engaged in educating medical professionals?
A: In terms of patients as educators, there are certainly trans and gender diverse people who have created webinars and educational forums for healthcare professionals to learn from their experiences and I would encourage seeking them out.
I would not expect people who are actively your patients to educate you on these matters – they are coming to us as professionals for our advice and when we ask patients to educate us, it is hard for them to say no, even when they feel uncomfortable doing so, because of the power dynamic. I think it is our responsibility to find resources from professionals and from advocates who have created content for us of their own accord.
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Patricia Ford, MD
Medical Director, Center for Transfusion Free Medicine Stem Cell Transplant Program Research Department
University of Pennsylvania, Philadelphia, PA
Title of Presentation: Religion: Bloodless Transplant for Jehovah’s Witnesses
Q: How did you become interested in transfusion free medicine?
A: My first year out of fellowship as an attending, the local church elders asked if my hospital would be willing to provide care to Jehovah’s Witnesses in our tri-state region. The hospital agreed but felt a physician champion was needed and I, being the junior physician, was assigned the role. I agreed, feeling I was able to accept their beliefs, and embarked on an intense self-learning and community engagement process.
Q: What types of blood transfusions will Jehovah’s Witnesses accept? What types of transplants and cellular therapy does your center perform for them?
A: Jehovah’s Witnesses will accept transfusion with blood derivatives, but not transfusions with whole blood or its four primary components: red cells, white cells, platelets, or plasma. Our center performs autologous transplants (with stem cells processed in normal saline and albumin) for eligible patients with an appropriate indication, plus Jehovah’s Witnesses will accept CAR-T cell therapy.
Q: What advice do you have for programs interested in providing transplants for Jehovah’s Witnesses? Will you share your processes and protocols with other centers?
A: It’s important to understand their Biblical views on blood transfusion. JW.org is a nice website, plus I recommend you meet with leaders in your region to learn about their belief system and engage them in working with you. Yes, I’ll certainly share the processes and protocols we’ve developed with interested centers.
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Mark Walters, MD
Director, Pediatric Blood and Marrow Transplant Program
University of California San Francisco Benioff Children’s Hospital, Oakland, CA
Title of Presentation: Understanding and Addressing Sickle Cell Disease Healthcare Disparities: Searching for New Therapies
Q: How has disparity in healthcare affected the search for new therapies for sickle cell disease?
A: Historically there has been disproportionate funding (both federal and philanthropic) among rare genetic diseases in the United States. The federal funding and expenditures per year per patient with sickle cell disease has been much lower than that for patients with cystic fibrosis and hemophilia, both less common diseases. It’s only recently, in this awakening regarding inclusion, diversity and equity, and how that affects the practice of medicine, that we’ve begun to get the resources we need to discover and develop new therapies for sickle cell disease.
Q: What drives your search for new therapies for patients with sickle cell disease?
A: The lifespan in SCD is 30 years shorter than in African Americans without SCD, which is a health disparity that has not changed for decades. Thus, the compelling reason for having many different approaches to therapies with curative potential is that this metric is unacceptable, and reflects disparities in access to care, funding for research to discover curative therapies, and access to participate in clinical trials. It is thus very appropriate to have ‘many shots on goal’ as has been described by the NHLBI Cure Sickle Cell Initiative. It is rewarding to participate in more than one of the therapies, each of which I hope can be applied according to the specific feature of an individual’s sickle cell disease.
Q: Could you explain how gene therapy may remove the barriers to transplantation for sickle cell disease? What do you see as the future of gene therapy for this disease?
A: Patients may not have a suitable donor for a transplant, and many care providers, patients and their families are concerned about the risks associated with transplantation. Gene therapy may protect from hemoglobinopathy-related complications with an acceptable toxicity profile. However, we have much to learn about gene therapy and its long-term safety profile. In addition, will the cost and complexity of gene therapy impact access to care? These are unanswered questions that must be addressed.
Tags: BMT, transplantation, Cellular therapy, Transplant, cell therapy, Tandem, patient, tandem meetings, 2022, Culturally Sensitive Care, Care, Providers, Spotlight Session, Conversations