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Supporting Innovation for People With Sickle Cell Disease

Sharl Azar, MD, of the Comprehensive Sickle Cell Disease Treatment Center at an event celebrating The Vertex Foundation gift

Donor Story

Supporting Innovation for People With Sickle Cell Disease

With support from The Vertex Foundation, the Mass General Comprehensive Sickle Cell Disease Treatment Center will expand its innovative, multidisciplinary approach to treating a disease that historically has not received the attention it deserves.

by
Nancy Kilburn
June 6, 2022

The Vertex Foundation recently announced a $2 million gift to support Massachusetts General Hospital’s Comprehensive Sickle Cell Disease Treatment Center, a groundbreaking, multidisciplinary approach to caring for patients with sickle cell disease.

Launched in early 2021, and led by Sharl Azar, MD, the Comprehensive Sickle Cell Disease Treatment Center is an important part of the hospital’s commitment to advancing health equity. Sickle cell disease (SCD) is an inherited, life-threatening blood disorder that disproportionately impacts African Americans — 98% of patients with SCD are Black and rates of SCD are higher among Latinx and other ethnicities than among whites. Unlike diseases such as cystic fibrosis, SCD historically has not received the funding needed to provide comprehensive care for patients.

Improving Quality of Life with a Holistic Care Approach

The Comprehensive Sickle Cell Disease Treatment Center takes a holistic, interdisciplinary approach to SCD. The Center provides patients with a true medical home where they can access primary care, hematology and behavioral health, as well as palliative care and integrative medicine such as acupuncture, massage therapy, yoga and meditation, which help ameliorate the pain associated with the disease. The partnership with palliative care is especially novel — palliative care specialists take a whole patient approach to managing symptoms and address the psychological, spiritual and emotional dimensions of having a painful, life-threatening condition.

Increasing Survival Rates Through a Lifetime of Care

The Center cares for patients at every stage of life. Mortality rates for patients with SCD are highest as they transition from pediatric care to adult care — when they are usually required to change medical providers and often become disconnected from treatment. The Center sees patients of every age, allowing them to continue to receive complex care that addresses their full range of medical needs, even as they evolve across their lifespan. Already this has led to marked improvements in survival rates.

Adding Innovations for Patients and Families

With support from The Vertex Foundation, the Center will establish two new groundbreaking initiatives: a dedicated athletic training program and a first-of-its-kind survivorship program. Patients with SCD have traditionally needed to limit their physical activity because it can exacerbate their symptoms. The Center has had great initial success addressing this challenge by pairing patients with an athletic trainer with expertise in SCD. Now, all patients will be partnered with the trainer to develop individualized plans that enable them to safely exercise and pursue activities they enjoy without fearing the reaction of their SCD.

The SCD Survivorship Program — unique to the Center — will support patients and their families as they navigate the complexity and mortality of the disease. The program will help patients have peace of mind, knowing that their families will be cared for when they are gone. It will also prepare them for the difficult decisions they may face as their disease progresses — ultimately knowing they will not be making these decisions alone.

Establishing New Treatment Best Practices

The Center’s multidimensional approach has already had a remarkable impact on the quality of life and survival rates of people living with SCD. Patients previously on high doses of opioids have transitioned to more holistic pain management that relieves them of debilitating side effects. One patient who had been hospitalized nearly continuously for two years recently went for two months without being admitted and was able to go on his first family vacation in years.

Adding athletic training and the survivorship program — and evaluating the impact on patients and families — will enable the Comprehensive Sickle Cell Disease Treatment Center to continue to establish new best practices in caring for patients with SCD, helping them to live longer, more satisfying lives.

“This transformational gift from The Vertex Foundation will allow us to further our mission to create a comprehensive medical home for patients — a place where they can feel heard, where they can feel safe, and where they know that an entire team is rallying around them,” says Director Sharl Azar, MD.  “We are deeply appreciative of this partnership and look forward to many years of serving the SCD community.”

To make a donation or for more information about the Comprehensive Sickle Cell Disease Treatment Center, please contact us.