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A Vision of Total Care for Adults with Sickle Cell Disease

This was not a very good week. Three of my patients, whom I have followed for more than 20 years, were in the hospital.

We all have these patients. Patients who have essentially grown older with us. We know their families well. We talk to their wives, husbands, siblings and children. We worry when their jobs fall apart. But mine are special patients – they have sickle cell disease, an inherited blood disorder that affects approximately 1,400 Bronx residents, most of them of African-American and Hispanic descent.  Many of them I have been seeing since I first came to Montefiore and Einstein as junior faculty in 1985. 

Sickle cell care has a unique historic connection to the Bronx. A clinic set up at Einstein in the 1960s was the first in the U.S. to focus on the condition. It was called the "Heredity Clinic" and was designed to take care of patients while exploring the interaction of genes and medicine –at that time a revolutionary goal. And the patients came. They came because they knew their doctors were people who cared about all aspects of sickle cell disease.

Some 20 years later, this idea of total care became the Bronx Comprehensive Sickle Cell Center at Montefiore.  It was one of only 10 NIH-funded centers in the country and its directive was to be all things to all people with sickle cell disease. Patients came with their complications such as leg ulcers, stroke, renal failure and sickle cell crises, severe painful episodes that occur when irregularly shaped red blood cells become lodged in small blood vessels and block the flow of blood and oxygen to the body. But in 2009, the NIH stopped funding the centers.  Devoid of this vital financial support, adult sickle cell care at Montefiore had to be scaled back.

Montefiore, with its long history of caring for these patients, realized something had to be done for adults with sickle cell disease.  Forty years ago we might not have had to worry, since sickle cell patients didn't live very long into adulthood. But today, we have patients in their 70s and a few in their 80s. What's more, they're now getting the diseases that other middle-aged and elderly people get – heart disease, diabetes and obesity. They need hip replacements, eye doctors, dentists and vascular surgeons. We help deliver their babies. I expect now to help deliver their grandchildren.

Very soon we will be able to look after all adult sickle cell patients in a much more complete way, from young adults who are "aging out" of pediatric care to the elderly. We are recruiting clinicians to treat adults of all ages with sickle cell disease --  nurse practitioners and physicians who will follow our patients in the clinic, in the ED, on inpatient units and even to the OR. The team for this updated service will manage the medical and social service needs of sickle cell patients, running clinical trials in order to get state-of-the-art therapy for patients and engaging subspecialists to handle sickle cell complications.

When my three patients returned to the hospital this week, I was reminded of how difficult life can be for many people with this disease. But change is underway, and I feel hopeful that better days are ahead for the hundreds of adult sickle cell patients my colleagues and I follow. Our vision to provide them with the total care they need is within our reach.

Henny Billett, MD, MSc is Chief of the Division of Hematology at Montefiore Medical Center, and Professor of Clinical Medicine and Clinical Pathology at Albert Einstein College of Medicine of Yeshiva University.

Posted by blogmoderator on 10/30/2013 at 8:52 AM Add Comment