In part two of my series for National Sickle Cell Awareness Month, I will focus on my personal connection to the disease and the history of testing and campaigns in the city of Milwaukee, WI. As I mentioned in part one I inherited sickle cell trait from my father, but I developed mild symptoms of the disease, which was unusual for carriers of the trait. As a child I remember suffering painful episodes that were attributed to “growing pains”. I have had bouts of anemia through my adult life, and doctors would tell me to take iron supplements. As I became more aware of the disease I discovered that this may have made the symptoms worse. These are examples of how knowing your status can make a huge difference in your health and quality of life.
During the late 60’s to early 70’s, the Black Panther Party was active in many parts of the Midwest, including Milwaukee. They developed over 60 community programs in a concept they termed “revolutionary intercommunalism”. One of those programs was to offer sickle cell anemia research and free testing. “Established by the Black Panther Party in 1971 to test and create a cure for sickle cell anemia, the Sickle Cell Anemia Research Foundation informs people about sickle cell anemia and maintains a national advisory committee of doctors to research this crippling disease” (Hilliard, 2010). Around this time, my father was active in the Milwaukee Commandos, another civil rights group associated with the local NAACP. He knew that I should be tested as an infant because he inherited the trait from his mother, and there was a new clinic that opened in September of 1971.
Dr. George Henry Lane (1902-1982) is responsible for the establishment of the Sickle Cell Anemia Center at Deaconess Hospital in September 1971. It was the first federally funded center for screening and counseling in the state and was open through 1977. The clinic was recognized nationally as one of the best, and there were frequent fund-raising activities and outreach programs through the cooperation of local radio stations and community leaders.
An article in 1972 from the Star-News in Wilmington, N.C., reads “several young black couples in Milwaukee will be told this year they should not have children because they carry the trait for sickle cell anemia. It is a sad situation. The one in Wilmington is even worse, however, because the black couples here will not be told if they carry this trait. As a result they will have children, and chances are on out of four of their children will be born with and die from the disease. The difference between Wilmington and Milwaukee is the Sickle Cell Center of Deaconess Hospital in Milwaukee. This hospital has a clinic which offers Milwaukee residents free mass blood testing. In the event that the sickle cell trait is found in a couple, genetic counseling is also made available” (Millen, 1972).
This excerpt gives one the sense of how important the issue was in the black communities across the country. Doctors were still discovering what the disease was and how to treat it, but raising awareness was a primary concern. The clinic at Deaconess Hospital also continued their outreach efforts after the clinic was opened. Decentralized testing was key because they knew that the majority of people would not travel to the hospital to be tested. Advocates such as Nellie Kendrick, who was the chairman of the clinic’s Community Advisory Committee, mobilized hundreds of volunteers to educate and motivate city residents to be screened in block-by-block campaigns. They rang doorbells and delivered leaflets reminding people when and where to be screened. They enlisted the aid of the Black Greek fraternities and sororities, community service organizations, such as the Milwaukee Links who were one of the original sponsors, and even the Boy Scouts to help with the advocacy efforts.
I spoke to Steve Rogers, 52, from Milwaukee who remembers the outreach programs they had in schools at the time:
”They had a program at 12th Street School in the auditorium. It was a film about sickle cell anemia, who gets it, how to be screened for it. Afterwards, they gave us information to take home. Looking back, it was the first and only time in my school career that sickle cell was ever discussed. When I was in the 11th grade in high school, my friend’s brother died from sickle cell anemia, and I still didn’t know what it really was or why he died from it. It puzzles me to this day that although we study black history month in school, that we don’t teach children about sickle cell disease, give handouts or promote screenings. In my opinion, I think that sickle cell disease is overlooked in the African American community because it’s never discussed anymore, including in the mainstream media. People aren’t concerned about it because you don’t hear anything about it until someone dies from it. You get the impression it’s not important because the media do not treat it like its important. No one encourages African Americans to get tested, they don’t know where to go to be tested, or who should be tested. Lack of information creates a sense of apathy about the disease in general” (S. Rogers, personal communication, September 2014).
Advocacy went beyond community outreach in the neighborhoods and schools. Doctors traveled to other hospitals and correctional institutions to test patients and inmates. In response to a public awareness campaign in 1971, President Nixon singled out sickle cell disease to Congress, calling for an increase in federal spending on sickle cell research, education, and screening. This was thanks to the efforts of Dr. Roland Scott, who was one of the first physicians to call for mass screening. Scott argued that although sickle cell disease was more prevalent than other genetic disorders, little attention or public health effort was given to the disease. He stated that there was no known cure, but could be controlled through screening and counseling.
“About 60 black inmates at the Wisconsin Home for Women, Taycheedah, were to be tested here this afternoon for sickle cell anemia by members of the Southeastern Wisconsin Sickle Cell Center at Deaconess Hospital, Milwaukee. Kenneth Trester, a member of the Deaconess testing team, noted that he was originally contacted by Dr. John U. Peters, prison doctor, to do testing for sickle cell anemia at the home. Only black women will be tested and these strictly on a volunteer basis. (Julka, 1971).
More than 40 years later, and the only stories I read are about the unfortunate death of people who were not aware of their status, or like me, were unaware of the conditions that may exaggerate the symptoms. I was retested last year because my original records were no longer available, but I wanted to ensure it was part of my permanent health record. You may notice that when you visit the doctor they now ask questions about your family’s health history. Doctors want to know what diseases you close relatives may have, or may have died from. They understand how genetics can affect your health, and how they may be able to control or even prevent you from ever having symptoms of even the most common diseases like most cancers, heart disease and diabetes. However, I wonder how many people know their family health history? When doctors see my chart that says I have sickle cell they almost always do a double take. Is that because they don’t see many people who know their status? Unfortunately, that is probably the case.
Why does it seem that we are not as vigilant as we were in the 70’s, or as Mr. Rogers stated in his interview? Some recent stories in the news seem to indicate that we have slid backwards in our education and advocacy. A kickboxer from Milwaukee died recently from what the medical examiner determined to be trauma to the head. During the bout “witnesses at the fight said Munson became listless during the second round and was staggering at times in the third round. Munson’s mother, Irene Bryant, said the fight should have been stopped. Munson had the genetic marker known as sickle cell trait, but not the disease itself. His family said he did not have any health problems before the fight” (Diedrich, 2014). Similarly, students at the college level have required testing or a waiver before being allowed to participate in certain sports. It has been found that athletes with sickle cell trait can suffer crises-like symptoms with exhaustion and fatigue. During intense exercise the red blood cells can sickle and accumulate in the bloodstream, leading to severe physical distress or even death. Conditions like heat, dehydration, and altitude can also be contributing factors.
A case that received national attention was that of Derek Williams, who died in the back of a police car after his request for help because he couldn’t breathe went unanswered. The coroner says he may have suffered from sickle cell trait. “The inquest jury found probable cause that Williams – who had a genetic marker for sickle cell but not the disease itself – died of sickle-cell crisis” (Ramde, 2013).
“Christopher Poulos, the assistant county medical examiner who resigned after reclassifying Williams’ death as a homicide, and Brian Peterson, current Milwaukee County Medical Examiner, each testified that Williams died of sickle cell crisis. Poulos and Peterson pointed to a study of Army recruits and college athletes with sickle cell trait who died during great exertion in basic training or athletic training. Williams, chased by police as a suspect in an attempted street robbery, had run about 500 feet before being arrested. Both examiners testified that they changed the classification of death from natural to homicide after they learned that force had been applied to Williams during his arrest. Police reports state that Williams had been resisting arrest and officers pushed him to the ground and at one point had a knee on his back to restrain him. Neither coroner testified about how much force was used or how much force they believed had been used to restrain Williams” (Pollock, 2013). This is similar to the case of the death of Mario Mallett in the back of a police wagon in 2001. “Like Williams, Mallett carried the sickle cell trait. Mallett, 29, died after he struggled with officers. His hands were cuffed behind his back and his ankles were shackled when he was placed in the back of the wagon, according to media reports at the time” (Barton, 2012). The medical examiner later ruled that died of a heart attack caused by acute exhaustive mania, and that sickle cell trait, the extreme cold and the fact that Mallett had an enlarged heart contributed to his death.
In spite of what seems like a national sense of apathy toward sickle cell, there are many advocates who are still tirelessly promoting education, screening and hope to patients and the public arena. These are people who have the disease, or know someone who is suffering or lost their battle with sickle cell. People like Tokara Whitman, who I spoke to about her determination to spread the word:
“My cousin, Carlotta Thomas lived with sickle cell for 44 years. She was diagnosed at about 5 or 6 years old with the most severe form of sickle cell anemia, and suffered with frequent, painful pain crises. I don’t think she was tested as an infant, but probably found out her status after the National Sickle Cell Anemia Control Act was passed in 1972 requiring all newborns to be tested for the disease. Carlotta passed away last November, and I want to continue to speak on her behalf to increase education and awareness” (T. Whitman, personal communication, September 2014).
Because of her dedication to the cause, Tokara was asked to address a crowd of patients and advocates during a recent luncheon event at the Froedtert Hospital Sickle Cell Clinic. The clinic has been open for about three years and has recently introduced a transition program from Children’s Hospital to the adult facility. This makes it easier for patients with sickle cell to get progressive care into adulthood, when there may be changes to insurance benefits and other health coverage. The first annual “Success in Honor of Sickle Cell Awareness Month” luncheon was held in September to show appreciation for patients of the clinic, their families, friends and anyone who wanted to show their support. Dr. Joshua Field, who specializes in the treatment of sickle cell disease at the clinic, was on hand to reassure patients, provide research updates, and news of new medications and clinical trials. Later, they dedicated moments of silence and memorials to those who are suffering or lost their battle with the disease. Tokara spoke last, and prayed that the process of sharing her story would make a difference, and show her true sincerity and compassion for the cause.
“In order to advocate for sickle cell disease we have to be willing to put action behind our words, raise awareness, promote education and find money for funding, research and screening. The clinic does have at least one major sponsor, but there is much more that needs to be done. I would appreciate anyone contributing in any way possible to help promote the cause. It can be as simple as sharing information with friends, family, and co-workers. I started an advocacy page on Facebook called the “Sickle Cell Warriors/Wisconsin”. This page will provide information on how you can get involved as a volunteer, and when and where to be tested. I have also posted a petition to the Obama administration to “Declare Sickle Cell Disease a national health priority and support legislation to expand and establish SCD programs”. We need 100,000 signatures before October 23rd, 2014, to reauthorize the Sickle Cell Treatment Act and today we are at a little over 10% of our goal. World Sickle Cell Day is on Thursday, June 19 in 2015, and I would like to initiate a walk to raise awareness. We are planning on a fundraiser in March to try and secure the facility for the walk by April 2015. Other fundraising events included an upcoming toy drive at my job, and a local fitness marathon. Please like the Sickle Cell Warriors/Wisconsin page Facebook to get updates on events and to contact me for more information” (T. Whitman, personal communication, September 2014).
There are new drugs and treatments that can help ease the pain of those with sickle cell disease. However, it is still necessary to remain vigilant participating in clinical trials, and volunteering to donate blood to find the best match. Fear may be the reason why we became apathetic, but it has only led to misinformation and lack of trust. We have to learn how to be our own best advocate when it comes to our health, and a major part of that means asking questions about our family health history. We need to be aware of what our government is doing with federal funds, and continue to lobby for additional monies to support research and screening. Most importantly, we have to recreate the sense of community that we lost so we can rely on each for information and assistance when we need it. Perhaps with this renewed interest and dedication we can eradicate this disease and make it a footnote in our history.
Barton, G. (2012, March 11). Death in squad car leaves trail of anger, doubt. Retrieved September 5, 2014, from http://www.jsonline.com/watchdog/watchdogreports/death-in-squad-car-leav…
Diedrich, J. (2014, September 3). Medical Examiner: Injuries to head led to kickboxer death. Retrieved September 10, 2014, from http://www.jsonline.com/news/milwaukee/medical-examiner-injuries-to-head…
Julka, S. (1971, November 30). Inmates Being Tested for Sickle Anemia. Fond Du Lac Commonwealth Reporter. Retrieved September 16, 2014, from http://www.newspapers.com/clip/1089238/inmates_tested_for_sickle_cell/
Hilliard, D. & the Dr. Huey P. Newton Foundation. (2010). The Black Panther Party: Service to the People Programs. [NOOK version]. Retrieved September 10, 2014, from http://www.barnesandnoble.com/w/black-panther-party-david-hilliard/11016…
Millen, S. (1972, June 25). Sickle Cell Anemia: To Some It Means A Home Without A Child. Wilmington Star-News. Retrieved August 3, 2014, from http://news.google.com/newspapers?id=i2g0AAAAIBAJ&sjid=wQkEAAAAIBAJ&pg=2…
Pollock, T. (2013, February 18). Inquest into Death of Milwaukee Man in Police Car Resumes After Week of Clashes. Retrieved September 26, 2014, from http://theuptake.org/2013/02/18/inquest-into-death-of-milwaukee-man-in-p…
Ramde, D. (2013, March 29). Derek Williams Case: Wisconsin Officers Won’t Be Charged In Suspect’s Death. Retrieved September 26, 2014, from http://www.huffingtonpost.com/2013/03/29/derek-williams-death-wisconsin-cops-officers-charges_n_2980999.html