Sickle Cell Disease Patient & Advocate
For most of his life 71-year-old George Harris Carter, sickle cell advocate and patient, has known pain. At age 5 he suffered his very first crisis—a severe sickle cell attack characterized by extreme pain—in his hips and legs. Without a car, he and his stepmother walked to the nearest bus stop to travel to the doctor’s office. “Every step was excruciating. I remember that even though I was young,” Carter said.
The doctor sent them to the hospital, where physicians suspected he had sickle cell disease and removed a gland from under one of his arms. “I guess they thought that had something to do with [the crisis]. I had never had any problems with that gland before that. So, the treatment back then obviously was not adequate,” said Carter.
Carter’s sickle cell diagnosis was confirmed years later when he was in junior high school and his pediatrician sent him to Howard University’s Sickle Cell Program in Washington, DC. There he underwent a battery of tests that made the diagnosis official. Later, Carter learned he had Sickle Beta Thalassemia from the Sickle Cell Program at the then Medical College of Virginia (now Virginia Commonwealth University). However, it would not be until he was in his late sixties that he learned the exact form of sickle cell disease he has—Sickle Beta Thalassemia Zero. “It took a long time to get my full diagnosis,” he said.
Carter credits his family for helping him learn how to take care of himself and how to live with his disease. “All the rules that are there for good health for people, sickle cell patients need to take them even more seriously,” he said.
“All the rules that are there for good health for people, sickle cell patients need to take them even more seriously,”
Today Carter serves as the administrator for two nonprofit organizations in Virginia—Sickle Cell Associations of Richmond-OSCAR and Sickle Cell Chapters of Virginia (also called Statewide Sickle Cell Chapters of Virginia). Both organizations strive to educate the public, implement service programs, encourage support for research and empower persons who live with sickle cell disease, and advocate on their behalf. His current focus is to educate others about sickle cell trait—the carrier state of the disease.
Another matter of concern for Carter is the effect the opioid epidemic has had on treatment for his sickle cell disease. Despite consistent medical care from the same doctor for 30 years, Carter has experienced challenges in getting prescriptions for the opioid medications that have helped him manage his pain. “My doctor has treated me every 3 months for the last 30 years. Now, with the [opioid] crisis he will not even write me a prescription for opioids of any kind. He knows me better than anybody. And, I worry about the backlash on other sickle cell patients with other doctors. Will they be given enough opioids for their pain?” said Carter.
The NIH Office of Pain Policy recently conducted a Q & A with Carter about his work and experiences as an advocate and individual with sickle cell disease.
Pain is a major factor with Sickle Cell Disease. How has pain impacted your life?
Pain is in most cases THE factor, not a factor. Pain shapes your life to a very large degree. I’ve been lucky…I’m not in pain as much as some people but when you’re in pain, the amount of pain determines how much you can do or what you can do during the course of any given day.
When it’s down in the lower levels, one thing that helps me is distraction therapy—listening to the radio or looking at TV, whatever gets my mind off the pain. That doesn’t do it totally, but it helps. When I have a lower level of pain I can still for the most part go about my normal schedule, I’m slower but I can still do things. The more pain, the less I can do and when we really get to that top level of pain where it’s hospitalization, there is nothing I can do but deal with the pain.
What is a critical barrier to advancing the understanding of sickle cell disease?
There are a lot of barriers, but one of the biggest is money. You can educate the public better about sickle cell. It is the driving force behind research. We know that sickle cell only affects approximately 100,000 people in the US. Most pharmaceutical companies don’t want to create drugs for populations that are small and certainly not less than 200,000—that’s their benchmark. Mindset, race, and other things, are all factors. Education also is a factor. There is a lack of education in the medical community about sickle cell.
From a patient’s perspective, what should researchers and clinicians know about understanding and treating sickle cell disease?
The biggest factor is the pain. They should know that pain can control your life and that they must treat the pain completely. It took a long time for many physicians to get to a point in which they were willing to give higher doses and long acting opioids to sickle cell patients. We were treated like drug seekers. A lot of doctors do not believe that we hurt that much. We are accused of making noise to get attention. They don’t understand that the pain can be so intense that you pray to God to let you die. Pain is looked at as just one of the issues, not the most prominent issue. It is treated in more of a secondary manner, not primary.
From an advocate’s perspective, what should the public know about living with sickle cell disease?
First, the public needs to understand what sickle cell is and what effect it has on people. Individuals with sickle cell can still achieve. There are some that are disabled because of everyday pain or strokes, but don’t think because I have sickle cell that I am not intelligent enough to do something I can perform. Don’t question my ability. Sickle cell doesn’t affect ability. A lot of patients don’t want people to know they have sickle cell because they don’t want to be looked upon as inferior. The public needs to understand that we can achieve. Also, the public needs to join in the fight to find a cure for sickle cell and help raise awareness about sickle cell so that there is a greater understanding in the world.
Have you experienced health disparities in pain care?
Yes, but a lot of people have experienced more than I have. I carry a sickle cell data sheet with my insurance information and all the medications I am on as well as a treatment plan for the emergency room. The sheet is signed by my doctor. I do that because I don’t want to go to an emergency room and have a doctor to think I’m a drug seeker. Doctors who lack the training and knowledge about sickle cell do not believe the intensity of pain that we have. So, it is a major issue and it causes disparities.
To learn more about sickle-cell patient experiences, see Today's Faces of Sickle Cell Disease.