Make Meaning Out of Tragedy We are feeling the pain of grief. Lots of us have felt the pain of grief this year. We’ve lost loved ones, friends, and sickle cell warriors. I, being the kind of bookish person that I am, read up on the stages of grief—you know, the anger, guilt, and acceptance message that I thought would help. It did and it didn’t. I was helped by friends in the sickle cell community, friends who understand that we are all grieving when our grown children can’t seem to find the care they need. Grieving when the new therapies we’ve heard so much about are dismissed by doctors we thought we could trust. And of course, grieving when we find that our child is suffering from yet more damage from this disease: kidney failure, stroke, hip necrosis, whatever. That grief righteously turns to anger. We’ve known the science behind sickle cell for at least 100 years, but I can count successful therapies on the fingers of one hand—that’s pathetic. Thank God for the doctors that figured out that penicillin could help our children live through childhood, and for those who discovered that hydroxyurea could work in preventing painful crises. But for those of us who have lost loved ones, we wonder if more could have been done. It’s this question that haunts us, especially for those who are still living. Is enough being done? Am I doing enough? Each of us has to answer these questions for ourselves. For me, I know I have to continue the battle. That means writing, speaking, and engaging with everyone who might be able to help. And everyone can help. Helping might take the form of a call to a member of Congress in support of legislation. Helping might mean making a donation. Helping might mean speaking up at a club meeting or at church. Once I’ve decided on a purpose and a direction, the grief and anger tend to fade. I know they’ll be back. Grief and anger seem to come in waves—sometimes when least expected. But if I’m doing something I don’t feel the guilt—it’s a way to make meaning out of tragedy.   Nancy M. René Co-Founder, JVT Advocates Los Angeles, California, United States

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I’m Tired and Angry I’m tired and I imagine you are too, tired and angry about the same stories of inappropriate, racist treatment of people with sickle cell disease from our healthcare providers. Over and over “they said I just wanted drugs,” “they called security on me.” I’m tired and angry. It’s like going through a door that is stuck, you try to get it open, you push and shove and yet the door stays stuck. You may think to yourself, how can I fix this damn thing, do I need a file or saw to make it smaller, do I need a screwdriver to tighten the hinge, or should I give up and call a handyman? I find it ironic that we can easily think of ways to fix a door, the tools we need come quickly to mind, and yet we don’t have a clue for fixing the treatment of people with sickle cell disease. This is not true of the entire healthcare system. If we women feel a lump in our breast, we know what tools are available. We can call our regular doctor, or visit a clinic. This is true of most healthcare issues, heart disease, pregnancy, accidents or injuries. There are doctors able to treat us, doctors who do not accuse us of being drug seekers because we have made a trip to the emergency room. So what’s different about sickle cell disease? Frankly sickle cell disease is just about the only illness that affects mainly people of African ancestry. For all the other conditions I mentioned earlier, there are lots of research and plenty of specialists situated all across the country. A person experiencing a heart attack can find a doctor to treat him, he doesn’t have to hope that the local emergency room doctors will actually know something about heart disease or won’t accuse him of being a drug addict when he shows up at the hospital. The problems of racism in medicine began of course with the kidnapping and enslavement of people from Africa. This supposedly Christian nation had to find ways to resolve the cognitive dissonance between believing in a fair and righteous God and holding people in bondage. They decided that thinking of Africans as animals, close in heritage to the chimp or baboon, would give them the permission they needed to rape the women and sell the children to the highest bidder. If you think these racist practices are in the distant past, think again. We can continue our awful treatment of people with sickle cell disease because they are somehow “less than.” Things are changing. Researchers are working on cures, professional organizations are coming to grips with their part in this sad story, yet those stories persist. If we are to fix racist practices in healthcare, we must fix racism. We must understand that all lives are worth saving and that unbiased, high quality treatment of all patients must be the accepted standard of care.   Nancy M. René Co-Founder, JVT Advocates Los Angeles, California, United States

Rationale: The rationale for this article is that one of the most important ways to measure the quality of healthcare is to ask the individuals who actually receive the care. It is beneficial to have a survey that can be easily understood, tells about what people experience and can be used in different places to allow comparisons. In some cases, standard surveys like the Consumer Assessments of Health Care Providers and Systems (CAHPS) and the Patient Reported Outcomes Measurement Information System (PROMIS) are used. But these surveys have general questions about healthcare and do not focus on sickle cell disease (SCD). Background: The National Heart Lung and Blood Institute (NHLBI), one of the divisions of the National Institutes of Health (NIH), is a government organization that focuses on SCD research. NHLBI sponsored the creation of the Adult Sickle Cell Quality of Life Measurement (ASCQ-Me, pronounced “Ask me”), a survey for adults living with SCD about their quality of life and health. In work done prior to this study, areas of concern in adult sickle cell care were identified from consumer working groups, then individual and focus group interviews with 122 adults and 15 providers. This revealed several themes: 1) Lack of SCD knowledge on the part of outpatient and ED providers, patients accused of drug seeking (stigmatized) and receiving ineffective and inappropriate care 2) Extremely long waits before receiving care in the ED 3) Disrespectful providers who did not consider information provided by the patient leading to undermedication or overmedication for pain 4) Preference for adults to treat the symptoms of SCD outside of the healthcare setting This information was used to make questions that could capture a person’s experience over the last 12 months. Some example questions included: “How successfully was pain treated in the ED?”, “How often did your (regular) doctor or nurse listen carefully to you?”, “When you tried to get an appointment to see a provider, how often were you able to get one as soon as you wanted?” (Answers ranging from Never to Always). Study Results: This study enrolled 556 people with SCD from 7 different geographical areas around the US who volunteered to answer 27 questions like the ones listed above. Of those volunteers, 90% had a history of severe pain within the last 12 months, 20% within the last week, and 9% had a pain episode at the time they volunteered to take the survey. Analysis of the answers showed that there were 3 groups of questions (domains) that were important: Provider Communication, ED Care, and Access to routine and emergency care. A total of 13 questions which seemed to be the most reliable were divided up into each of these areas and grouped together (making a “composite”) to give an overall idea about each area. The final survey could be completed in 2–10 minutes. Most of the individuals who volunteered for this study (80%) saw a sickle cell doctor or nurse and often had 3 or more visits with them in the last 12 months. In general, the quality of care from that sickle cell provider was rated high. This showed the sickle cell-specific survey questions are reliable and can reveal when the quality of care of is generally good. These same sickle cell individuals also reported a low quality of healthcare overall, particularly in the ED, based on things like how long people had to wait, was the staff courteous and respectful, and if they helped the pain. This was similar to reports from other groups of Medicaid patients who took the more general surveys, although this quality was much lower for those with sickle cell than for other people with Medicaid. This showed that the sickle cell-specific survey can also accurately identify when care is not of high quality.  Importance of this study: This study created a survey, the ASCQ-Me Quality of Care survey, which is a reliable way to measure people’s experience in the healthcare system and can identify both high and low quality of care specifically for SCD. It is relatively short and easy to use and provides a way to better understand and compare where healthcare is done and it needs to be improved for adults with SCD. Abstract source

My Journey from Vaccine Hesitancy to Acceptance As an African American healthcare professional, I felt it was my responsibility to lead the way and champion the vaccine in our community. However as a black woman, I was intimately aware of the disparities and racial biases in healthcare, and I was scared. So I did some research and satisfied my rational brain that the vaccine was safe—but my emotional heart was still not on board. One day I heard a comedian say “We drink energy drinks, and have no idea what’s in them, but we’re afraid of a vaccine developed by experts and given to hundreds of thousands of people.” Strange as it sounds, that did it for me. I thought, he’s right! My rational brain and emotional heart were finally on the same page, and I received two doses of the vaccine with no side effects.   Yvonne Carroll, RN, JD IASCNAPA Board Member Director Patient Service Hematology St. Jude Children’s Research Hospital Memphis, Tennessee, United States

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