Author Archives: Emma Day

MARAC Statement: Health Insurance Coverage for MSD SCT

MARAC Statement: Health Insurance Coverage for Hematopoietic Stem Cell Transplant for Sickle Cell Disease from HLA-matched Sibling Donor (MSD HCT)

Sept. 16, 2023

BACKGROUND
Hematopoietic stem cell transplant for sickle cell disease from HLA-matched sibling donor (MSD) after myeloablative conditioning has been proven as curative therapy for sickle cell disease for over 25 years. It is no longer considered an experimental procedure. Over 2,000 transplants have been performed successfully across the world from HLA-matched sibling donors. Pooled Overall Survival rates for children and adults are high at 97% and 98%, respectively (meta-analysis by Iqbal 2021). The outcomes in sickle cell disease are much better for younger ages, but outcomes can still be good for selected adults. MSD HCT is expensive, but multiple analyses have shown that long-term health care costs go down, quality of life improves and organ damage is usually slowed or stopped. This means that MSD HCT is very cost-effective for the family, the health care system and society in general (less than $50k per QALY). Therefore, it is logical for MSD HCT to be covered by health insurance.

PROBLEM
Refusals of coverage for MSD HCT are concerning to SCDAA. Some of the publicly available insurers’ guidelines (REFERENCES below) appear to be based upon older datasets. The success of MSD HCT and a number of other therapies for SCD make the ethical implementation of a randomized trial of MSD HCT vs. a “control group” very difficult, and insurance companies should not expect such a large randomized controlled trial data to emerge. Similarly, federal agencies are no longer writing guidelines for sickle cell disease care, leaving guidelines to the professional societies like the American Society of Hematology.
The core mission of SCDAA is to work toward a universal cure for sickle cell disease. MSD HCT is well established as potentially curative therapy (although not universal because of the limitation of finding an MSD). SCDAA Medical Advisory and Research Committee (MARAC) offers to help health insurance payers gain an accurate picture of the stratification of risks and benefits of MSD HCT.

RECOMMENDATIONS
MARAC recommends MSD HCT for sickle cell disease should be covered by health insurance policies. Broad eligibility for MSD HCT would be an indicator of insurance coverage that understands the modern cost-effective management of sickle cell disease. Barriers to eligibility would indicate a low-quality policy that perpetuates health system barriers to care and adds to the health disparities in sickle cell disease.
MARAC recommends that modern datasets and the latest analyses should be used in consideration of insurance coverage policies for sickle cell disease, because HCT procedures and eligibility have moved forward since the first landmark studies and progressed even further in the past 10 years. Outcomes are best for individuals below age 5.

The current evidence base includes:

  1. American Society of Hematology guidelines (Kanter et al. Blood Adv 2021)
  2. Cost-effectiveness analysis (Arnold et al. Biol Blood Marrow Transplant. 2015)
  3. Pediatric Bone Marrow Transplant Consortium late-effects guidelines (Shenoy et al. Biol Blood Marrow
    Transplant. 2018).
  4. Large review. (Iqbal et al. Transplant Cell Ther. 2021).
  5. Risk stratification by age. (Brazauskas et al. Blood. 2020).
  6. Risk stratification by donor and conditioning regimen. (Eapen et al. Lancet Haematol. 2019).

MARAC endorses a patient-centered shared-decision-making process about MSD HCT. The risks and benefits of sickle cell disease are very individualized. However, the insurance payer should not be the gatekeeper for the decision for potentially curative therapy, because cost-effectiveness is already established.
MARAC offers assistance to insurance payers as “content experts” in sickle cell disease. MARAC could provide input on accurate information for insurance policies. MARAC is considering mobilizing a panel of sickle cell experts to provide an evidence-based review of denials of insurance coverage for MSD HCT. We also invite insurers to join the numerous educational sessions conducted by SCDAA and its member organizations.

REFERENCES
Current information about Hematopoietic Stem Cell Transplant for sickle cell disease.

  1. Kanter J, Liem RI, Bernaudin F, Bolaños-Meade J, Fitzhugh CD, Hankins JS, Murad MH, Panepinto JA, Rondelli D, Shenoy S, Wagner J, Walters MC, Woolford T, Meerpohl JJ, Tisdale J. American Society of Hematology 2021 guidelines for sickle cell disease: stem cell transplantation. Blood Adv. 2021 Sep 28;5(18):3668-3689. doi: 10.1182/bloodadvances.2021004394C. PMID: 34581773; PMCID: PMC8945587
  2. Cost-effectiveness analysis Arnold SD, Jin Z, Sands S, Bhatia M, Kung AL, Satwani P. Allogeneic Hematopoietic Cell Transplantation for Children with Sickle Cell Disease Is Beneficial and Cost- Effective: A Single-Center Analysis. Biol Blood Marrow Transplant. 2015 Jul;21(7):1258-65. doi: 10.1016/j.
    bHCT.2015.01.010. Epub 2015 Jan 20. PMID: 25615608; PMCID: PMC5605133.
  3. Pediatric Bone Marrow Transplant Consortium late-effects guidelines Shenoy S, Gaziev J, Angelucci E, King A, Bhatia M, Smith A, Bresters D, Haight AE, Duncan CN, de la Fuente J, Dietz AC, Baker KS, Pulsipher MA, Walters MC. Late Effects Screening Guidelines after Hematopoietic Cell Transplantation (HCT) for Hemoglobinopathy: Consensus Statement from the Second Pediatric Blood and Marrow Transplant Consortium International Conference on Late Effects after Pediatric HCT. Biol Blood Marrow Transplant. 2018 Jul;24(7):1313-1321. doi: 10.1016/bbmt.2018.04.002. Epub 2018 Apr 10. PMID: 29653206.

The latest evidence.

  • Large review. Iqbal M, Reljic T, Corbacioglu S, de la Fuente J, Gluckman E, Kumar A, Yassine F, Ayala E, El-Jawahri A, Murthy H, Almohareb F, Hashmi SK, Cappelli B, Alahmari A, Scigliuolo GM, Kassim A, Aljurf M, Kharfan-Dabaja MA. Systematic Review/Meta-Analysis on Efficacy of Allogeneic
    Hematopoietic Cell Transplantation in Sickle Cell Disease: An International Effort on Behalf of the Pediatric Diseases Working Party of European Society for Blood and Marrow Transplantation and the Sickle Cell Transplantation International Consortium. Transplant Cell Ther. 2021 Feb;27(2):167.e1-167.e12. doi: 10.1016/j.jtct.2020.10.007. Epub 2020 Dec 10. PMID: 33830027.
  • Risk stratification by age. Brazauskas R, Scigliuolo GM, Wang HL, Cappelli B, Ruggeri A, Fitzhugh CD, Hankins JS, Kanter J, Meerpohl JJ, Panepinto JA, Rondelli D, Shenoy S, Walters MC, Wagner JE, Tisdale JF, Gluckman E, Eapen M. Risk score to predict event-free survival after hematopoietic cell transplant for sickle cell disease. Blood. 2020 Jul 30;136(5):623-626. Doi: 10.1182/blood.2020005687. PMID: 32518950; PMCID: PMC7393258.
  • Risk stratification by donor and conditioning regimen. Eapen M, Brazauskas R, Walters MC, Bernaudin F, Bo-Subait K, Fitzhugh CD, Hankins JS, Kanter J, Meerpohl JJ, Bolaños-Meade J, Panepinto JA, Rondelli D, Shenoy S, Williamson J, Woolford TL, Gluckman E, Wagner JE, Tisdale JF. Effect of donor
    type and conditioning regimen intensity on allogeneic transplantation outcomes in patients with sickle cell disease: a retrospective multicentre, cohort study. Lancet Haematol. 2019 Nov;6(11):e585-e596. doi: 10.1016/S2352-3026(19)30154-1. Epub 2019 Sep 5. PMID: 31495699; PMCID: PMC6813907.

Insurance Coverage Policies about transplant for hemoglobinopathies and/or genetic diseases

  1. AmeriGroup (November 2021) https://medpol.providers.amerigroup.com/docs/gpp/AGP_HistoricalMedPol_TRANS_00029.pdf?v=202301052014 Accessed 9/15/2023
  2. NC Medicaid. (August 2023) https://medicaid.ncdhhs.gov/11a-5-allogeneic-hematopoietic-transplant-genetic-diseases-and-acquired-anemias/download?attachment Accessed 9/15/2023
  3. Premera Blue Cross (Jan 2023) https://www.premera.com/medicalpolicies/8.01.538.pdf Accessed 9/15/2023

Download this statement.

MARAC Statement: Update About COVID

Sept. 16, 2023 – The worldwide pandemic of COVID-19 (SARS-CoV2) infections seem to have settled down, and we are now seeing waves of infections with new variants. As facemasks come off and isolation rules end, everybody has higher chances of catching other respiratory infections, such as RSV (respiratory syncytial virus) and influenza (flu). SCDAA’s Medical and Research Advisory Committee (MARAC) endorses a shared-decision-making process about vaccines and treatments but would like to offer unbiased information to help in the decision-making process.

1. MARAC recommends that individuals with sickle cell disease and members of their households get all immunizations as they become available. Immunizations generally reduce the risks of severe infection and hospitalization, both for the individual receiving the immunization and for the people around them.

MARAC has specifically monitored news about COVID vaccines over the past 3 years to determine the side effect and benefits of immunization. The global experience with COVID immunizations spans hundreds of thousands of individuals with sickle cell disease, and we have only heard about side effects that are temporary and medically mild. Rare exceptions would be individuals with unusual allergies to vaccine ingredients.

2. If an individual with sickle cell disease catches COVID and has symptoms, we recommend that they strongly consider seeking anti-COVID treatment to reduce the chances of severe acute chest syndrome or other sickle cell problems. Individuals with sickle cell disease have a higher risk of hospitalization with COVID than the general population, especially when matched for the
same age.

3. MARAC highlights that giving corticosteroids (oral or IV) can often trigger a “rebound” pattern of sickle cell pain or sickle acute chest syndrome a couple days after the steroids stop. Steroids are widely used in general medical practice for symptoms of many kinds, including COVID and RSV. However, MARAC recommends that steroids should only be given to individuals with sickle cell disease under the advice of a sickle cell expert* who can carefully consider whether the scenario is worth the risk of steroid rebound sickle cell pain or acute chest syndrome.

MARAC is continuing to monitor the situation. Click here to download this statement.

None of the MARAC members receive funding for any COVID treatments or vaccines.

*To connect with a sickle cell expert, MARAC suggests the listings in the National Alliance of Sickle
Cell Centers. SCDAA MARAC and the National Alliance of Sickle Cell Centers are developing phone consultation resources.

SCDAA and MedicAlert Foundation Launch Pilot Program

Leading Sickle Cell Organization and MedicAlert Foundation Launch Pilot Program to Improve Emergency Care During Sickle Cell Pain Crises

Non-profits partner to help people with sickle cell disease get faster, better emergency care.

HANOVER, MD – Sickle Cell Disease Association of America (SCDAA), the leading national organization and voice for people with sickle cell disease (SCD), today launched a pilot program with MedicAlert Foundation to enhance the safety and well-being of people living with sickle cell disease (SCD).

Acute pain episodes known as sickle cell crises are one of the most common and debilitating symptoms of SCD. These crises can be unpredictable and extremely painful, lasting from a few hours to a few weeks. They’re the number one reason people with SCD seek emergency treatment.

However, SCD patients seeking treatment for a sickle cell crisis face hurdles to getting the care they need in the Emergency Department (ED). The goal of the pilot program is to improve access to timely, effective emergency care for people experiencing a sickle cell crisis.

The program provides participants with a MedicAlert digital health profile to store their physician-approved pain plan, physician contact information, and other vital health data. Each participant also receives a customized Smart Medical ID Card, which provides easy access to their health information and pain plan via a QR code.

The goal is to shortcut time to diagnosis and treatment. When seeking emergency treatment, participants will present their Smart ID Card to share their health history with ED personnel – confirming their SCD status, and providing the critical details needed for ED personnel to provide care.

“With more than 100,000 people in the U.S. living with SCD, finding an intervention to help improve the speed and quality of ED care would be hugely impactful,” said Regina Hartfield, President and CEO of SCDAA. “For this program, we’re leveraging Medicalert’s decades of experience providing medical information in emergencies – as well as MedicAlert’s visibility in the medical community – to help people living with sickle cell.”

MedicAlert Foundation is a leading nonprofit providing lifesaving medical ID and emergency response services for millions of people living with chronic health conditions.

“Since 1956, MedicAlert has been globally trusted by both emergency medical personnel and people living with serious health conditions,” stated Karen Cassel, MedicAlert Foundation’s President and CEO. “We’re pleased to launch this pilot during Sickle Cell Awareness Month. Our hope is to equip and empower SCD patients with tools to help them quickly get the care they need during a pain crisis.”

The pilot will run for one year. Two-hundred fifty adults in states with significant sickle cell populations are being recruited to participate in the first round.

“We believe this program has the potential to significantly improve outcomes for people experiencing sickle cell crises,” Hartfield said. “With positive results, we’ll seek additional funding to expand the program nationally.”

More details about the program, including full eligibility guidelines and how to apply, are available at medicalert.org/sicklecellpilot. Anyone living with SCD who has additional questions about the pilot should contact either their local SCDAA chapter, or email MedicAlert at sicklecellpilot@medicalert.org.  

Sickle Cell Awareness Month 2023 Events

All across the country, our member organizations are hosting exciting events for Sickle Cell Awareness Month this September. Check out the list below to find an event near you.

Alabama

California

Connecticut

Delaware

Florida

Georgia

Illinois

Kansas

Louisiana

Maryland

Michigan

Minnesota

Missouri

New Jersey

New York

Ohio

Oklahoma

South Carolina

  • Sept. 30: 5K Race | Columbia, South Carolina
    Hosted by the James R. Clark Memorial Sickle Cell Foundation

Tennessee

Texas

 

Abstracts Accepted Until 11:59 p.m. PST

This morning, we were notified that some users experienced issues using our 2023 National Abstract Competition portal. This issue has been remedied. SCDAA is accepting abstract submissions until 11:59 p.m. PST, July 17, 2023. If you tried to submit an abstract earlier today and encountered a problem, please click here to resubmit your work before the deadline. Thank you for your patience.  

MARAC Statement: Crizanlizumab (Adakveo)

July 7, 2023 – SCDAA’s Medical and Research Advisory Committee (MARAC) notes that the European Medicines Agency’s (EMA) Committee for Medicinal Products for Human Use (CHMP) recommended on May 26, 2023, that the conditional marketing authorization for crizanlizumab (Adakveo) be revoked. The EMA stated that this revocation was triggered by the findings of the Novartis STAND multinational clinical trial showing no significant benefit of crizanlizumab over placebo in reducing pain or hospitalizations. Novartis reports that there were no safety problems in STAND. Abstract PB2512 submitted to the 2023 European Hematology Association reports no new safety issues in Novartis’ post-marketing surveillance of over 5,000 patient-treatment-years.

Crizanlizumab was given United States Food and Drug Administration (FDA) approval in November 2019 and remains on the market in the U.S. Americans with sickle cell disease are still receiving this treatment. MARAC urges the FDA to keep crizanlizumab available for use in the U.S. while it awaits more detailed examination of the data so that individuals with sickle cell disease can benefit from this treatment.

Read the full statement here.

SCDAA Teams with MedicAlert Foundation


Sickle Cell Disease Association of America Teams with MedicAlert Foundation to Improve Emergency Outcomes During Sickle Cell Crises

Nonprofits partner to help people with sickle cell disease get faster, better emergency care.

The Sickle Cell Disease Association of America, the leading patient organization for people with sickle cell disease, announced a pilot program with MedicAlert Foundation to enhance the safety and well-being of people living with sickle cell disease.

More than 100,000 Americans live with sickle cell disease, a genetic blood disorder that affects red blood cells. Acute pain episodes known as sickle cell crises are one of the most common and debilitating symptoms of sickle cell disease. These crises can be unpredictable and extremely painful, lasting from a few hours to a few weeks. They’re the No. 1 reason people with sickle cell disease seek emergency treatment.

However, patients seeking treatment for a sickle cell crisis face hurdles to getting the care they need in the emergency department. Many emergency physicians are not well versed in sickle cell disease and treatment protocols. And with the rise of the opioid crisis, emergency department providers are cautious about providing the powerful pain medication needed to quell a sickle cell crisis. Sometimes sickle cell patients are unfairly labeled as “drug seekers” by emergency department personnel who don’t understand the disease.

The Sickle Cell Disease Association of America and MedicAlert pilot program aim to improve access to timely, effective emergency care for people experiencing a sickle cell crisis. MedicAlert Foundation is a leading nonprofit providing lifesaving medical identification and emergency response services for millions of people living with chronic health conditions.

“Delayed treatment in a sickle cell crisis can lead to long-term organ damage and other health complications — not to mention the unnecessary pain the person with sickle cell disease must endure,” said Regina Hartfield, president and CEO of the Sickle Cell Disease Association of America. “MedicAlert has decades of experience storing critical health information and making it available to emergency personnel. We want to leverage that to improve the experience for people seeking treatment for a sickle cell crisis.”

The pilot program will provide participants with a MedicAlert digital health profile to securely store their health information, treatment and pain plans, medications, physician information, emergency contacts and more. Each participant will also receive a customized Smart Medical ID Card, which provides easy access to their health information and physician-prescribed pain management plan via a QR code.

The goal is to decrease time to diagnosis and treatment, improving health outcomes from a sickle cell crisis. When seeking emergency treatment, participants can use the Smart ID Card to share their health history with emergency department personnel — confirming their sickle cell disease status and providing the critical details needed for personnel to provide care.

“Since 1956, MedicAlert has been globally trusted by both emergency medical personnel and people living with serious health conditions,” stated Karen Cassel, MedicAlert Foundation’s president and CEO. “Through this collaboration, we hope to equip and empower sickle cell patients with tools to help them quickly get the care they need during a pain crisis.”

The pilot program, which will run for one year, is set to launch in September 2023 during National Sickle Cell Awareness Month. Two-hundred-fifty individuals will be recruited for the first round.

“We believe this program has the potential to significantly improve outcomes for people experiencing sickle cell crises,” Hartfield said. “With positive results, we’ll seek additional funding to expand the program nationally.”

Cassel said, “Both MedicAlert Foundation and the Sickle Cell Disease Association of America express our deepest thanks to Insperity Inc. for funding this pilot through their grant program. We’re grateful for their support and commitment to improving quality of life in the communities they serve.” Insperity is a leading provider of scalable human resources solutions for small to mid-size companies.

More details about the pilot program, including eligibility guidelines and how to apply, will be announced in late June. Anyone living with sickle cell disease who is interested in participating in the pilot should contact either their local Sickle Cell Disease Association of America chapter or email MedicAlert at sicklecellpilot@medicalert.org.  

Afimmune joins the SCD C.A.R.E.S. Consortium

Dublin, Ireland, 19 June 2023: Afimmune, a clinical stage biopharmaceutical company developing novel rare disease therapeutics, today announced it has been invited to join the Sickle Cell Disease Association of America’s (SCDAA) Collaboration of Advocates for Research, Education and Science (C.A.R.E.S.) Consortium.

The mission of this initiative is to raise awareness about the importance of clinical trials and why it can help sickle cell patients to participate in them. The SCDAA along with other participating strategic pharma partners came together to help educate sickle cell patients on the potential treatment options available and to encourage more clinical trial participation.

Commenting on the update, Dr. Moayed Hamza, MD, Chief Medical Officer of Afimmune said,“With today being World Sickle Cell Day, it is timely to announce our membership to the SCDAA C.A.R.E.S. Consortium. I look forward to working with the other members to continue to drive improvement in the treatment landscape for patients suffering from sickle cell disease.”

SCDAA President and CEO, Ms. Regina Hartfield said, “We are thrilled that Afimmune has joined our expanding consortium and look forward to collaborating with their team to increase awareness within the sickle cell community.”

About Epeleuton

Epeleuton is 15-hydroxy eicosapentaenoic acid (15(S)-HEPE) ethyl ester, a novel synthetic fatty acid drug product. Epeleuton has been shown to have a unique dual mechanism of action for the treatment of SCD, targeting factors affecting severity, course of disease, and vaso-occlusive crisis risk.

Afimmune is developing Epeleuton for SCD due to its novel disease-modifying preclinical efficacy, first-in-class opportunity and a significantly reduced regulatory pathway. Epeleuton has received orphan drug designation for the treatment of SCD from the FDA and EMA

About Sickle Cell Disease
SCD is a group of inherited, progressive blood disorders carried by the β allele of the hemoglobin gene with an expected 30-year reduced life expectancy. The disease is characterized by abnormal polymerization of hemoglobin during oxygenation which results in the sickling of red blood cells. The disease is rare, with an estimated prevalence of only ~100,000 people affected in the US and ~52,000 people in the EU.

About Afimmune
Afimmune, headquartered in Dublin, Ireland, is a clinical stage drug discovery and development company working on new medicines to improve the quality of life for people with rare and inflammatory diseases.

About SCDAA

Sickle Cell Disease Association of America advocates for people affected by sickle cell conditions and empowers community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure. The association and more than 50 member organizations support sickle cell research, public and professional health education and patient and community services. (www.sicklecelldisease.org)

Contact
investor.relations@afimmune.com  

CMO Speaks: Gene Therapy for SCD (Part 1)

CMO Speaks is a blog featuring the voices of SCDAA’s clinical leadership team. Part 1 of our Gene Therapy series was written by Dr. Lewis Hsu and Dr. Sri Lakshmi Jamalapur.

How can you cure an inherited disease like sickle cell disease? One way would be to develop some extremely effective medications that would alleviate all the symptoms. Another would be to transplant stem cells that produce red blood cells. But the ultimate way to cure genetic disease is with gene therapy.

Gene therapy is a relatively new treatment for sickle cell warriors. Researchers began conducting experimental studies (clinical research) in people about seven years ago. At first, the only approach to this treatment was a process called “gene addition” developed by the Boston-based pharmaceutical company bluebird bio. Soon, several other groups joined with other approaches for gene therapy. By early 2022, there were six competing organizations enrolling in gene therapy clinical research. They are listed in the table below.

There has been a lot of news recently regarding gene therapy. Earlier this year, The New York Times published this article about gene therapy and sickle cell disease, which highlighted the voices and experiences of advocates from around our community and brought renewed attention to this pioneering treatment. Two pharmaceutical groups say that they will bring their gene therapy clinical research results to the U.S. Food and Drug Administration (FDA) for possible approval as safe and effective in the first quarter of 2023 (highlighted green in the table).

At the same time, in late February, three other groups announced that they are closing their gene therapy clinical research studies (highlighted yellow in the table). Some people worry that seeing companies end their gene therapy studies is not good news for sickle cell disease. However, another way to look at these announcements is that the most fruitful studies are heading toward possible FDA approval. Less productive clinical research efforts are cutting their losses and being pruned away.

It’s like a gardener doing work in a little garden to keep the plants that are bearing fruit (the two groups that will bring their results to U.S. FDA) alive but removing those plants that have stopped growing (the groups that are closing their gene therapy clinical research). The wisdom of pruning down the less productive activity is recognized by many proverbs, including “if you run after two hares, you will catch neither,” or “have too many irons in the fire,” or “he who tries to sit on two chairs will end up sitting on neither,” or John 15:1 in the Bible. Drop-out studies are part of the healthy competitive process of research and investment.

Table 1: Current and upcoming studies of gene therapy in SCD. (adapted from Kanter and Falcon 2021; Hsu and Jamalapur 2022) N/A – not applicable; LVV – lentiviral vector; HbAT87Q – Hb with a single mutation conferring most of the antisickling effect of γ-globin; βAS3 – an antisickling β-globin containing 3 amino acid substitutions in the wild-type HBB; HbFG16D – modified HbF that increases affinity to α-globin to outcompete sickle mutated β-globin; AAV6 – Adeno-Associated Virus serotype 6.

Outside of gene therapy studies, promising sickle cell progress is everywhere. Researchers are developing innovative medications and studying stem cell transplants that could make a world of difference to warriors who are unable or unwilling to undergo gene therapy in the future. The clinical research process is fine-tuned to determine which treatments are safe and effective. Sickle cell warriors are encouraged to help push this research forward by participating in clinical trials.

Lewis Hsu, MD, PhD, is a pediatric hematologist who serves as director of the Sickle Cell Center and professor of pediatrics for the University of Illinois at Chicago. He has conducted sickle cell research, published over 50 peer-reviewed papers and co-authored “Hope and Destiny: The Patient and Parent’s Guide to Sickle Cell Disease and Sickle Cell Trait.” He currently serves as the SCDAA Chief Medical Officer.

Sri Lakshmi Jamalapur, MD, is a pediatric hematologist and the new leader for the Pediatric Sickle Cell Center at Children’s Hospital of Michigan in Detroit. She has collaborated with Dr. Hsu on health education and sickle cell advocacy since 2019.