The Pensacola Neighborhood Justice Board forms ‘ Bail Out ’ Program Continued from pg 1
Community pg . 4 The Gulf Coast Voice • September 27- October 4 , 2017
Ask Dr . Kevin : Debunking the Myths Around Sickle Cell Disease
By Dr . Kevin Williams ( Chief Medical Officer , Pfizer Rare Disease Unit )
This article is the second installment in the “ Ask Dr . Kevin ” series , brought to you by Pfizer Rare Disease in collaboration with the National Newspaper Publishers Association ( NNPA ) to increase understanding of sickle cell disease . In the United States , sickle cell disease ( SCD ) is considered rare because it affects only about 100,000 people nationwide . As such , not many people in the U . S . are aware of what SCD is , or if they are aware , they have limited experience with the disease . As with any disease , low awareness can spur myths and misperceptions and make it more difficult for those affected to obtain the care and support they need . Throughout my career , I ’ ve been asked a number of questions about SCD — many of which are common myths . In this article , I will share some of the more common myths , in an effort to separate out the facts from fiction . Sickle cell disease is a “ Black ” disease . Myth ! It ’ s true that in the U . S . more than 90 percent of people living with SCD are of African descent . In fact , SCD occurs in one out of every 365 African American births . However , it ’ s not exclusive to this patient population . SCD is also found in people of Indian , Middle Eastern , Hispanic , and Mediterranean ethnicities . Sickle cell disease is contagious . Myth ! You cannot “ catch ” SCD — it is a genetically inherited condition ( passed down from parent to child ). For a child to inherit SCD , both parents must carry the sickle cell trait ( or have the disease ) and each must pass the sickle cell gene to the child . A person with the sickle cell trait will automatically develop sickle cell disease . Myth ! Sickle cell trait is different from SCD . Just because a person carries the sickle cell trait does not mean they will have the disease . What ’ s the difference ? When a person has only one copy of the sickle cell gene , he or she will have sickle cell trait . Someone with SCD will have two copies of the sickle cell gene . A person with sickle cell trait can , however , pass the disease on to his or her child , if the other parent also has trait . 5 That ’ s why testing for sickle cell trait or disease is incredibly important . Sickle cell disease ( and sickle cell trait ) can be diagnosed through a simple blood test . 5 In developed countries , like the U . S ., babies are now routinely screened at birth to determine if they carry the trait or have the disease . People with sickle cell disease abuse pain medication . Myth ! Studies have shown that there is no increased substance abuse in patients with SCD . The most common symptom of SCD is excruciating , debilitating pain that often does not respond to over-the-counter medications and needs opioids to provide relief . Over time , the body becomes used to the opioids — ultimately leading to high doses being required to manage SCD pain . This need for high doses of opioids ( which may not even provide complete relief from the pain ), has unfortunately led to the perception that these patients are “ drug-seeking .” A baby born with SCD will die before reaching adulthood . Myth ! Until the 1990s , SCD was considered a life-threatening condition as many children born with the disease did not live to adulthood . In developed countries , like the US , this is no longer true , with the majority of children living to adulthood , thanks to advances in SCD care . However , the life expectancy of someone with SCD in the US is only between 40 and 60 years , compared to average US life expectancy of 78.74 years . There is still much more work to do to improve the outcomes of people with SCD in the US and worldwide , particularly in underdeveloped countries . Although the disease was identified more than 100 years ago , there are still very few medicines available to help patients or address SCD symptoms . While there has been recent progress in this area , more still needs to be done . At Pfizer Rare Disease , we are working tirelessly to bring safe , effective treatment options to those in need . One way to help address this is to encourage participation in clinical trials . To date , there have been several challenges in securing adequate participation of African Americans in clinical trials , which has been one of the key barriers to the development of new SCD medications . Addressing barriers in clinical trial participation has been a big focus of Pfizer Rare Disease , and working with organizations like the NNPA has been critical in helping spur engagement and
action . As part of our collaboration with NNPA , we have sponsored a national poll among the African American community to better understand their perceptions about SCD and participation in clinical trials , and will look to these findings to guide future efforts in this area . Hopefully , this article has helped to clear up some of the more common misperceptions about SCD . By increasing awareness and providing education about this disease , we aim to improve the care of those affected . Stay tuned for my next article that will discuss clinical trials in more depth and their role in helping to develop potential new SCD treatments . The next “ Ask Dr . Kevin ” article will run in December . Meanwhile , here are resources to find more information about sickle cell disease , the collaboration between the NNPA and Pfizer Rare Disease , and a new nationwide poll conducted by Howard University to deepen understanding and gauge perceptions around SCD and clinical trials among African Americans . Dr . Kevin Williams is the Chief Medical Officer for Rare Disease at Pfizer . He pursued medicine after being inspired by his father ’ s work as a general practitioner in his hometown of Baton Rouge , Louisiana . Dr . Kevin is passionate about raising awareness and increasing understanding of sickle cell disease in the African American community . You can follow Pfizer on Facebook
FREE FOOD GIVEAWAY for The Homeless and Needed Families Saturday 9 / 30 / 2017 at 10am Location : Pensacola Caring Hearts , 4801 N Palafox Street Pensacola , FL 32505 For Info call 850-375-1838
Studer Leads Conversation on Pensacola ’ s Future Continued from pg 1
Voice , “ The strategic timing of CivicCon taking place this year and next demands the attention of the entire community , particularly the Black community ”. Organizers of CivicCon made it clear that they are looking to include the Black grassroots , non-profit , business , Faith-Based , and professional communities to join into the process of talking to each other about the possibilities for positive and inclusive development . Watch the Gulf Coast Voice for interviews with Quint Studer , and the staff leadership at the Studer Community Institute .
The Pensacola Neighborhood Justice Board forms ‘ Bail Out ’ Program Continued from pg 1
we want to start this program in Pensacola , but it ’ s not our job to just stay in Pensacola . We want Pensacola to be our pilot program and we want this program to multiply around the country ,” stated Oneal . The Pensacola Neighborhood Justice Board ” is applying for their 501 © 3 and is the first program of its kind . “ Escambia County is the first place we will begin .” Oneal stated . “ In terms of our formation , we are right on time . We are also in the process of getting our website so that people can donate online . Every dollar that is donated will go to helping people with their money needed to get out of jail ,” he said . The Pensacola Neighborhood Justice Board has also partnered with a local bonding company , to assist them in getting people out . If you have any questions , please contact Omar Neal at mayoromarneal @ yahoo . com . Let him know you read it in The Gulf Coast Voice
When I said , “ My foot is slipping ,” your unfailing love , Lord , supported me . When anxiety was great within me , your consolation