S.C.A.R.E. in 1997

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S.C.A.R.E. in 1997 - The Year in Review

by: Deborah Oster Pannell

As we move into the new year, we at S.C.A.R.E. would like to share with you some of the highlights of 1997. This past year was an important one for us, as we have grown significantly in our ability to serve the sickle cell community. We look forward to 1998 as a year in which we will expand our operations even further, and invite you to consider how you, too, may contribute to the goal of empowering the sickle cell community through education and advocacy.

Ivor Pannell Granted Bronx Urban Health Fellowship
In January of 1997, Ivor Balin Pannell became a recipient of the Bronx Urban Health Fellowship, an award granted yearly to five health professionals and five community health activists or advocates working in the Bronx. This program, which is funded by the W.K. Kellogg Foundation and administered by Montefiore Medical Center in the Bronx, New York, has enabled Ivor to meet weekly with the other fellows to discuss issues related to urban health in the Bronx, as well as support one another in their work. In addition, through this fellowship, S.C.A.R.E. was awarded a mini-grant to develop and distribute a publication entitled, S.C.A.R.E. Tactics, A Sickle Cell Defier's Advocacy Handbook. This book, which we intend to distribute on request to members of the sickle cell community, will be a comprehensive guide to dealing with the most common situations we face on a daily basis. Our emphasis will be on dealing with challenges in a well-informed and self-confident fashion, the goal being to foster in ourselves a greater sense of independence and strength in the face of ongoing adversity. Look for S.C.A.R.E. Tactics... later this year.

S.C.A.R.E. Attends Advocacy Skills Building Conference
On April 5 and 6, Ivor and I attended an HIV Advocacy Skills Building Conference sponsored by New York CAN, a division of Gay Men's Health Crisis (GMHC), here in New York City. The two-day event was chock full of seminars on topics ranging from managed care legislation and grassroots organizing to political lobbying and dealing with the media. What we found is a well organized and politically savvy activist community which has been at the heart of treatment advances, and economic and political gains made by the AIDS community over the past decade. We learned and can continue to learn alot from these folks who have already tread along many of the same paths we in the sickle cell community must now travel, particularly in the areas of employment discrimination, grassroots organizing towards the passage of important legislation, lobbying for funds for better and more comprehensive research and treatment facilities, and perhaps most importantly, in combating the myths and misinformation about AIDS and HIV (in our case, sickle cell disease), both within the medical community and the public at large, that contribute to more general kinds of discrimination and maltreatment of people with AIDS (and sickle cell defiers) and their families, often with grave consequences. We also discovered areas of concern that affect both of our communities where we may work in coalition towards common goals, as in the arena of medical insurance access and managed care education. As the sickle cell community grows in self-awareness and strength, we will find that we have many allies with whom we can work on a number of important issues.

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Hertz Nazaire Joins S.C.A.R.E.
In June of 1997, we had the good fortune to meet Hertz Nazaire, a 24-year old sickle cell defier. When we met Hertz, he and Ivor were sitting together on a panel at the Pennsylvania State Sickle Cell Conference, and it wasn't long before the two of them realized they had a lot in common. After the conference, we maintained contact with one another via e-mail, and we soon figured out that the three of us could and should work together. Prior to our meeting Hertz, we had started a S.C.A.R.E. website on a server called Voice of the Ghetto (http://www.voiceoftheghetto.com - check it out if you get the chance). Hertz had also started his own personal webpage called Hertz Nazaire's Sickle Cell Patient's Web Page. We decided that we should combine forces and work together on one website for the benefit of the sickle cell community. By September, we had inaugurated defiers.com, and Hertz is now an integral member of the S.C.A.R.E. family, as sickle cell cyber-activist. I am also proud to report that defiers.com is currently receiving over 4000 hits a month, from well over 40 countries around the world. With the creation of the website, we have truly begun to realize our dream of creating a network of communication for the international sickle cell community.

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S.C.A.R.E. Offers Expert Testimony in Court Case
Over the summer we participated as expert witnesses in a court case involving a pre-natal misdiagnosis of sickle cell disease. In the Florida case of Small vs. Baylor College of Medicine, Mr. and Mrs. Small had tested their unborn child for sickle cell disease and had been told by their hospital lab that the diagnosis was negative. Based on this information, Mrs. Small gave birth to their son, Cito. However, several months later, the family was informed that indeed, little Cito did have sickle cell disease. It turns out that a mistake had been made and an incorrect test result had been reported to the Smalls. They decided to sue the hospital for Cito's anticipated medical expenses into adulthood, as well as for their own pain and suffering for incurring the unexpected emotional burden of caring for a chronically ill child, a burden for which they had been ill prepared.

The significance of Ivor's participation would be in helping to establish what could potentially be expected in the way of medical problems and complications for Cito as he grew to adulthood. My testimony would serve as evidence as to the emotional pain and suffering that the Smalls might experience as they saw their son through his various challenges. As you may imagine, the situation seemed a loaded one to us, and we deliberated extensively in deciding whether or not to offer our expert testimony in these areas. What ultimately convinced us to go ahead was our belief that the decision of whether or not to proceed with the birth of a child who has been determined to have sickle cell disease is a highly personal one, and the right to make this decision must be protected. The Smalls made an important decision on the faith that the hospital was providing them with accurate data regarding their unborn son's health status. The fact that such a mistake was made indicated to us a carelessness that should not be allowed to exist with regard to life and death decisions in sickle cell families. If our participation in this case could help to shed light on the crucial nature of these pre-natal tests, and the need for the utmost of care in their administration by medical facilities, then this would be sufficient reason to offer our assistance.

An equally grave concern we had regarding this case was the fact that the hospital, even though they had admitted that a mistake had been made, was trying to downplay the anticipated severity of what was potentially in store for Cito. Of course they wanted to pay as little as possible in damages, but it is not yet possible to predict how sickle cell disease will manifest in an individual's later life. Moreover, characterizing Cito's condition as one that probably wouldn't be too serious would be to deny the complexity and potential severity of sickle cell disease. This would set a precedent for downplaying the very real medical concerns of the sickle cell community. Since the implications of this kind of distorted and misleading information reach directly into the heart of the sickle cell struggle, we felt it was imperative to speak truthfully about the gravity of living with sickle cell disease, and not allow the hospital to write it off as a mild, low-priority condition.

After meeting with the Smalls and their attorney, it was determined that Ivor's testimony was stronger and more vital to the case, and he later gave his deposition here in New York City. Ultimately, the case did not go to trial, as it was settled out of court for an undisclosed amount of money. It is our hope that Ivor's testimony as to his own complex and difficult history with the disease was instrumental in weakening the hospital's position, and thus their resolve with regard to taking the case to trial. Although we were financially compensated for the time and energy we put into the case, it would have been more gratifying to have had light shed on these vital issues through the publicity that would have been generated by an open trial.

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S.C.A.R.E. Becomes a Non-Profit Organization
1997 also marked the beginning of S.C.A.R.E.'s application to officially become a non-profit, tax-exempt organization. In 1996, the Lawyers Alliance for New York agreed to take us on as clients in order to assist us in attaining this goal. They found volunteer attorneys from the international firm of Davis, Polk and Wardwell, who are currently guiding us through the multi-step process of forming a non-profit corporation. On last Thursday, February 5th, we signed our incorporation papers, and we anticipate that S.C.A.R.E. will be a full-fledged 501-c-3 tax-exempt corporation by mid-1998. What this means, is that S.C.A.R.E. is now eligible to apply for a myriad of grants given by corporations and foundations as well as local, state and federal governments. What it also means is that individuals who want to assist S.C.A.R.E. in being able to maintain our various programs can now make tax-deductible donations directly to us. Although we have been fortunate enough to receive a few small cash donations, a number of in-kind donations of equipment and supplies (including our first and only computer from the generous folks at Voice of the Ghetto), technical support from the Bronx Comprehensive Sickle Cell Center at Montefiore Medical Center, payment from the Small trial, as well as volunteer time and energy from our small circle of S.C.A.R.E. advocates, the majority of our operating expenses to date have come from our own pockets (and credit cards...), which are sadly running dry. It is an understatement to say that we are in desperate need of financial support. (An extra special THANK YOU to Dr. Naomi Rabinowitz for being the very first person to make a tax-deductible donation to S.C.A.R.E. and inaugurating our official fundraising drive!)

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S.C.A.R.E. Attends 25th Annual National Sickle Cell Disease Conference
1997 was an important year for the sickle cell community in that it was the 25th anniversary of the National Sickle Cell Disease Programs in the United States. This year's annual national sickle cell conference was held in Washington, DC from September 15-20. The event, which took place at the Grand Hyatt Hotel in downtown Washington, was sponsored by the National Heart, Lung and Blood Institute, the National Institutes of Health (NIH) and the Sickle Cell Disease Association of America (SCDAA). S.C.A.R.E. was in attendance, along with over 900 other participants from around the world, including doctors, researchers, nurses, psychologists, social workers, local sickle cell organizers as well as many people with sickle cell disease and their families.

The theme of this year's conference was "Keeping the Promise of Treatment and Cure". In addition to an unusually wide assortment of medical presentations and symposia, there were a number of events in which S.C.A.R.E. played a significant role or were of particular importance to us and the work we are doing.

As part of the Pain Subcommittee Meeting chaired by Dr. Lennette Benjamin, Co-Director of the Bronx Comprehensive Sickle Cell Center at Montefiore Medical Center, Ivor gave a presentation entitled, ": Physical Dependence: A Defier's Evolution of a Solution Update", which relayed his ongoing experience in managing his sickle cell pain and treatment. (For more information on this topic, see "What's new at defiers.com": for his paper, "A Defier's Approach to Physical Dependency and Sickle Cell Disease: Evolution of a Solution".)

Ivor and Hertz also presented with an Oakland, California sickle cell defier named Brandy Mayfield on the topic of "Creative Coping". In this presentation, the participants described how they each used some form of creative expression as a means of coping with their sickle cell disease in a positive, constructive manner. Brandy read and discussed some of her inspiring poetry, Hertz showed slides of several of his paintings , as well as some portions of this website, defiers.com, which he designed, and Ivor shared his critical reviews from the New York Times and Backstage from the time when he was a professional concert dancer. He also discussed the formation of S.C.A.R.E. and his work as a sickle cell activist as the ultimate representation of his creativity at this time. This panel was enthusiastically received by the audience, and proved to be one of the conference highlights.

Other significant portions of the Pain Subcommittee meeting included:
- A presentation by Celestine Fulchon, Ph.D. which showed that depression in sickle cell defiers could respond well to behavioral interventions such as counseling or therapy.
- Findings by Nancy Bauer, Ph.D. which pointed to self-hypnosis as a useful tool in helping to reduce the number of reported painful days for people with sickle cell disease.
- A study by Daniel Armstrong, Ph.D. in which nurses and doctors showed a statistically higher belief that children with sickle cell disease exaggerated their pain than did children with other illnesses such as AIDS, migraines or cancer. The sample believed that about 25% of sickle cell children were exaggerating their pain, while they believed that only between 11 and 16% of children with the other conditions were exaggerating their pain! This study was highly significant to the sickle cell community in that it seemed to prove what many of us have already known and experienced first hand - that people (and in this case, children!) reporting sickle cell pain are often suspected of lying or exaggerating, while the complaints of those with other medical conditions are seen as more legitimate. We hope to be able to post the entire study results on the site once they become available.

During a Patient/Family Roundtable discussion entitled, "Making it Against the Odds" we met an impressive woman named Muhjah Hassan, from Cincinnati, Ohio. Ms. Hassan is the mother of six children, two of whom have sickle cell disease. She is also the head of a community-based organization known as the Sickle Cell Parent and Family Network of Cincinnati and Greater Kentucky. Their focus is on the critical issues of societal racism, and how it affects the challenges of the sickle cell community, as well as the racist roots of western medicine and medical research as they relate to African Americans. Ms. Hassan spoke of the need to break down the barriers of distrust on the part of the African American community towards the medical profession. This distrust has its historical roots in events such as the now famed Tuskegee Experiment, in which African American men who were infected with syphillis were allowed to go untreated for their entire lives so that the effects on them and their families could be studied. Among her organization's activities are community forums whose goals are the education and empowerment of the sickle cell community. We hope to have an upcoming interview with Muhjah Hassan on defiers.com.

At the request of a sickle cell defier from Houston, Texas (thank you, Judith!), an impromptu meeting was called for defiers and other members of the sickle cell community from around the country. As an unplanned event that developed spontaneously from the needs of the conference attendees, this event had special significance for all of us who attended, about 40 in all. We had a good discussion regarding some of the main issues that affect sickle cell defiers and family members. Many folks spoke about their battles with fear and depression. A mailing list was started, and subsequently a copy of the list was sent around to all of the meeting attendees. It is our hope that this gathering was only the beginning of a nationwide network of sickle cell families, working together to improve the quality of our lives.

Ivor and Hertz were given the honor of presenting Dr. David Satcher, who is awaiting confirmation as the next Surgeon General of the U.S., with a plaque from the Sickle Cell Disease Association of America. The presentation took place at a gala luncheon attended by over 900 people, and with the blessing of Dr. Kwaku Ohene-Frempong, Chief Medical Officer of the SCDAA, Ivor also presented Dr. Satcher with a S.C.A.R.E. presskit as well as photos of Hertz' artwork. Dr. Satcher, the current head of the Centers for Disease Control and Prevention in Atlanta, received his doctorate in chromosome genetics and is also an expert in sickle cell disease. He was instrumental in President Clinton's decision to apologize to the survivors of the Tuskegee experiment in Atlanta, where Dr. Satcher was born. Although Dr. Satcher's confirmation has recently run into opposition by a conservative senate, we are hopeful that should he become the next Surgeon General, his role as the top ranking doctor in America would be of great significance to the sickle cell community. We wish him luck and encourage those of you who are so inclined to contact your Congressman/woman and register your support for Dr. Satcher's confirmation.

All in all, 1997 was a very important year for S.C.A.R.E., and so far 1998 looks like it's getting off to a pretty good start. We invite participation from all members of the sickle cell community and welcome any comments, ideas or suggestions. It's time to GET INVOLVED!

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