Tina Kay authored a resolution (co-authored by Francesca Valentine from Chicago, IL) for Sickle Cell Disease to become a national health initiative for the NAACP.  The national NAACP resolution committee will decide during the week of May 4, 2015 which resolutions will make it to the national convention for the NAACP in Philadelphia, PA July 10-14, 2015.  There will be a series of conference calls for the sickle cell community as a whole so that we can speak with 1 Voice, 1 Goal, and 1 Purpose in mind!  The conference call information is as follows:  Conference Call Phone#:  805-360-1000 Participant Access Code: 100460#

Timeline:
May 4, 2015:  First Conference Call for the Sickle Cell Community                                             May 5-8, 2015 make calls to the National NAACP Office and ask to speak with someone on the NAACP Resolution Committee or even CEO Cornell William Brooks and express to them by phone, Facebook, Twitter, and email  how important the SCD Resolution is to you and why.  I also urge you to reach out to board members in your area by going to http://www.naacp.org/pages/naacp-board-of-directors (to find out who is a board member in your area) and contact them also to let them know how important the SCD Resolution is to you and your family.  Below you will find talking points for this plan of action.              

Starting May 11, 2015-June 30, 2015: contact local NAACP units (chapters) to get onto their agenda to share our stories and the resolution.  The delegates who will attend the National NAACP convention in Philadelphia, PA, July 10-14, 2015 come from the local units (chapters) therefore, we need to make them as familiar as possible with the resolution what it says and what it means.  The motto of the NAACP is "We fight for your civil rights, stand with Us" and we need to use this to our advantage!  Talking Points will be provided for those who present to NAACP units chapters). 

June 19, 2015:  World Sickle Cell Day:  There will be an all out social media blitz that will be pushed to educate the public not only about Sickle Cell Disease but it will be a time to share the bad, the ugly, and worse situations that you have encountered as a patient.  We will take June 19, 2015 and not only share with the world but anyone connected to the NAACP, the Black Caucus, and your local, county, state and legislative representatives (elected officials) to share your life as someone living with SCD (patient, parent, loved one, spouse, caregiver, friends).  The plan is to takeover social media with SCD related information.

July 10-14:  National NAACP Convention, Philadelphia, PA We need to show up in numbers!   The delegates will vote for the SCD Resolution.

More Dates will be posted as well as talking points

“Resolution for Sickle Cell Disease To Become A Health Initiative of the NAACP”

Sponsored By:  Metro Birmingham, AL Unit #5006       Date Adopted: March 21, 2015

 WHERE AS, Sickle Cell Disease (SCD) is the most common inherited blood disorder in the United States.   Sickle cell disease is caused by a mutation in the hemoglobin-Beta gene found on chromosome 11. Hemoglobin transports oxygen from the lungs to other parts of the body. Red blood cells with normal hemoglobin (hemoglobin-A) are smooth and round and glide through blood vessels. In people with sickle cell disease, abnormal hemoglobin molecules - hemoglobin S - stick to one another and form long, rod-like structures. These structures cause red blood cells to become stiff, assuming a sickle shape. Their shape causes these red blood cells to pile up, causing blockages and damaging vital organs and tissue.  Sickle cells are destroyed rapidly in the bodies of people with the disease, causing anemia. This anemia is what gives the disease its commonly known name - sickle cell anemia; and

 WHERE AS, The sickle cells also block the flow of blood through vessels, resulting in lung tissue damage that causes acute chest syndrome, pain episodes, stroke and priapism (painful, prolonged erection). It also causes damage to the bones, spleen, kidneys and liver. The damage and/or removal of the spleen makes patients - especially young children - easily overwhelmed by bacterial infections.  Therefore, it is also considered an inherited multi-organ disorder leading to serious morbidity and premature death; and

 WHERE AS, It was not discovered in the United States however,1910 is regarded as the date of the discovery of sickle cell disease, making 2010 the 100th anniversary of that discovery, but just what does it mean to say the disease was “discovered”? SCD had been present in Africa for at least five thousand years and has been known by many names in many tribal languages. What we call its “discovery” in 1910 occurred, not in Africa, but in the United States by a young man named Walter Clement Noel from the island of Grenada, a dental student studying in Chicago, went to Dr. James B. Herrick with complaints of pain episodes, and symptoms of anemia. Herrick was a cardiologist and not too interested in Noel’s case so he assigned a resident, Dr. Ernest Irons to the case. Irons examined Noel’s blood under the microscope and saw red blood cells he described as “having the shape of a sickle”. When Herrick saw this in the chart, he became interested because he saw that this might be a new, unknown, disease. He subsequently published a paper in one of the medical journals in which he used the term “sickle shaped cells”; and

 WHERE AS, SCD affects millions of people throughout the world, 90,000-100,000 in the United States and is particularly common among those whose ancestors came from sub-Saharan Africa, India, Middle Eastern countries such as Saudi Arabia and Turkey and Mediterranean countries such as Greece and Italy. The disease is estimated to occur in 1 in 500 African Americans and 1 in 1,000 to 1,400 Hispanic Americans.  Although new born screenings are now given to babies who fit into the category of possibly being a carrier of the trait or could possibly have SCD and are tested before leaving the hospital this has not always been the case.  It has only been in the past approximately 25-30years that newborns began screening for SCD, leaving those who have not been tested misdiagnosed and for some never diagnosed at all (until possibly having a child, an extensive physical similar to the military, or begain having unusal health issues); and

 WHERE AS, SCD was discovered over 100 years ago and no census has ever been taken to determine the true number of people living with SCD or the trait.  There is no registry in place to record the number of people living with SCD in the United States leaving many without the needed resources with the same number of people living with SCD quoted for many years; and

 WHERE AS, SCD is categorized as an Orphan Disease: A rare disease that affects fewer than 200,000 people and  has not been adopted by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent SCD.  An orphan disease may be a rare disease (according to US criteria, a disease that affects fewer than 200,000 people) or a common disease that has been ignored (such as tuberculosis, cholera, typhoid, and malaria) because it is far more prevalent in developing countries than in the developed world.  Therefore, depending on where you get your numbers from they may not be the same but never exceeding 200,000; and

 WHERE AS, To date, the only drug approved by the Food and Drug Administration (FDA) to treat SCD is hydroxyurea, an anticancer drug that is indicated for use only in adults. Hydroxyurea is only moderately effective and has undesirable side effects that limit its use.  Many hematologist also prescribe strong narcotic drugs to help control the chronic and sudden pain.  Anti-depression medication are also prescribed because some studies have indicated that anti-depressants can also be used for chronic pain leaving many people with SCD with altered personalities and unable to actually function and have a normal and better quality of life.  With such toxic medications constantly and for most on a daily basis ingest all of the prescribed medications only leads to more complications within the body brought about by the drugs that allow SCD patients to live some type of normal life and tolerate the pain; and

 WHERE AS, There are very few hematologist who specialize in SCD leaving many patients with limited choices as it pertains to choosing a doctor who is knowledgeable in SCD and some patients drive hours to a medical facility where there is a SCD clinic only to spend many hours waiting to see a doctor for only10-15 minutes; and

 WHERE AS, Many SCD patients never know when a sickle cell crisis will take place forcing them to depend mostly on the help of doctors and nurses in emergency rooms who have not been trained to care for sickle cell patients.  Many hematologists use blood transfusion therapy and blood exchanges as a form or therapy because the red blood cells within a SCD patient only live within the body for 14 days whereas, normal red blood cells live for 120 days.  There have been some cases where SCD patients have been cured due to stem cell transplantation (a bone marrow transplant); unfortunately it is rare to find an exact match from a donor.  However, Stem Cell Transplantation but this is not a viable procedure for all patients.  Therefore, therapy is preventative including hydration, and pain management; and

 WHERE AS, Many adult patients sit in emergency department’s waiting room anywhere from 2 to 10 or more hours for treatment. However, once seen by a doctor many patients are considered to be drug seekers because the patient advises the doctor which medications work, the dosage, and the frequency needed for the patient to help the patient’s pain (that feels like broken glass traveling through the veins).  Each SCD patient is different, so the same treatment does not work for every SCD patient.  Most patients and/or parent, spouse, or loved one knows and understands who convey the information to the doctors and medical staff in emergency rooms share vital information regarding what will and will not work because SCD patients have been living and dealing with SCD their entire lives.  Unfortunately, medical professionals, most times in emergency departments consider the information provided by the SCD useless and more times than not consider the patient as someone who is a “drug seeking”.  With the attitudes, lack of knowledge, and in some cases resentment of the patient knowing more than the medical professionals serious complications could be missed, overlooked, and/or ignored; and

 WHERE AS, There is no emergency room protocol in place for those living with SCD and the trait who suffer needlessly while their bodies begin  to shut down and additional complications occur while sitting not only in the waiting room or lobby of emergency departments, but also as they wait for a doctor or nurse to come into the room. Many times stall tactics are used by the very people who can possibly determine a patients’ future. Emergency room medical professionals can determine quite a few things when a patient depends solely on the emergency room doctor and staff hoping to receive the same measure of care that is given to other patients.  The doctor can immediately begin basic treatment (i.e. providing IV hydration and oxygen) but ultimately the doctor is responsible for a SCD patient.  Many SCD patients consider the first 24 hours in the hospital to be the worst 24 hours in the hospital; and

WHERE AS, Patients are not receiving enough pain medication to last until the next doctors visit with doctors now providing more outpatient aid that can keep those living with SCD from being admitted into the hospital.  Patients are being told that there is a shortage of IV fluids in the United States therefore fluids are not given in clinics to prevent dehydration and to help the sticky hard red blood cells movement throughout the body that helps alleviate pain crisis.  If these pain crisis are dealt with at the onset, sometimes it is possible for a SCD patient to receive outpatient care instead of being admitted into the hospital;and

WHERE AS, With the Affordable Care Act the 30-Day Readmission rule was written into law it states patients readmitted into a hospital within 30 days of discharge; the discharging hospital will be fined in the form of reduction of reimbursements from the State for the patient’s hospitalization. Currently in the state of Illinois this rule affects patients with Medicaid insurance plans. This rule penalizes hospitals that care for SC patients who frequently have unplanned, unpredictable and recurring needs, such as controlling severe pain episodes that can only be managed in the hospital requiring multiple hospitalizations and readmissions in a 30 day period. In a recent nationwide study of 39,324 Medicaid admissions for SC crisis 40% of patients were readmitted to the hospital within 30 days.  Therefore we support SCD be waived from this rule; and

 WHERE AS, Patients receiving Medicare and Medicaid insurance benefits are currently being placed into “Managed Care Plans” with capitation of benefits; this will result in fiscal challenges to hospitals that care for SC patients with Medicare and Medicaid insurance benefits; and 

 WHERE AS, The Sickle Cell Treatment Act has not been reauthorized by President Obama however, it was put into place by President Nixon and reauthorized by President Bush.  Without this Act many living with SCD have been treated less than humane.  Currently, there is a Bill in the House of Representatives HR 5124 that still needs bi-partisanship to have the Act reinstated so that  SCD patients can regain the same rights that any person living with an inherited disease or disorder; and

WHERE AS, SCD patients are losing their jobs because of long hospital stays in spite of the ADA law that is meant to protect sicklers (or anyone with disabilities) who want to work from their jobs firing them for outlandish reasons.  Long term disability companies are not making SCD patients whole based on the policies purchased by sicklers.  And those who were once on SSI disability and try to work but spend more time in the hospital than working are finding it extremely difficult and almost impossible to reestablish SSI disability for their families to live; and

THEREFORE, Be it resolved, we strongly urge the NAACP to adopt Sickle Cell Disease as a priority health initiative by making Sickle Cell Disease a national health initiative for the NAACP. Help is needed because where there is no justice, there is no peace!                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                            References

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2. Saraf SL, Molokie RE, Nouraie M, et al. Differences in the clinical and genotypic presentation of sickle cell disease around the world. Pediatric respiratory reviews 2014;15:4-12.

1. Hassell KL. Population estimates of sickle cell disease in the U.S. American journal of preventive medicine 2010;38:S512-21.

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2. Nouraie M, Gordeuk VR. Blood transfusion and 30-day readmission rate in adult patients hospitalized with sickle cell disease crisis. Submitted 2015.

    

3. WinterPh.D, William P., "A Brief History of Sickle Cell Disease", http://www.sicklecell.howard.edu/ABriefHistoryofSickleCellDisease.htm 

4. Yang Nora PH.D, Seile Stephen, Kato Gregory M.D.,  NIH Government Research Aes-103 for Sickle Cell Disease,

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5. National Heart, Lung, and Blood Institute. Disease and conditions index. Sickle cell anemia: who is at risk? Bethesda, MD: US Department of Health and Human Services, National Institutes of Health, National Heart, Lung, and Blood Institute; 2009. Available from: http://www.nhlbi.nih.gov/health/dci/Diseases/Sca/SCA_WhoIsAtRisk.htmlExternal Web Site Icon http://www.cdc.gov/ncbddd/sicklecell/data.html