Tag Archives: sickle cell disease

Newswire : Pfizer, Sickle Cell advocates address disease during Black Press Week

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By Stacy M. Brown, NNPA Newswire Correspondent
@StacyBrownMedia

Panel on Sickle Cell Disease


National Sickle Cell Advocacy Day 2019 is a great time to focus on key legislative issues that are important to individuals and their families who are living with the blood cell disorder, including promoting stable funding for research, better healthcare access, expanded programs and increased education and awareness for the Sickle Cell Disease community and programs throughout the country.
Lori Luck, the global medical director for Pfizer Rare Disease, joined Beverley Frances-Gibson, the president and CEO of the SCD Association of America; and Angie Snyder, a professor at Georgia State University, to discuss the latest in Sickle Cell Disease advocacy during Black Press Week in Washington, D.C.
The discussion came ahead of National Sickle Cell Advocacy Day, which is actually held over two days on April 8 and April 9 at the Kellogg Conference Hotel at Gallaudet University in Washington.
The event features advocacy training and meetings with legislative champions and a collaboration of federal partners, as advocates attempt to raise awareness to the disease which affects about 100,000 Americans and occurs among nearly 1 out of every 365 black or African American births.
According to researchers, the illness occurs among about 1 out of every 16,300 Hispanic American births and about 1 in 13 black or African American babies are born with sickle cell trait, meaning that the individual has inherited the sickle cell gene from one of his or her parents.
“We’re educators and we’re not only educating internal clients but external as well,” said Luck, who noted that Pfizer has partnerships with the Centers for Disease Control and Prevention as well as other organizations.
The company also has a partnership with the National Newspaper Publishers Association (NNPA), a trade association of more than 200 African-American–owned community newspapers from around the United States.
The partnership is a collaboration to raise awareness of sickle cell disease, a lifelong and debilitating genetic disorder that affects red blood cells.
People with rare diseases, like sickle cell disease, have unique and complex challenges and the Pfizer partnership provides an opportunity for NNPA to inform and educate readers of Black-owned newspapers in more than 70 markets across the country on sickle cell disease, which NNPA President and CEO Dr. Benjamin F. Chavis, Jr., said is an often misunderstood disease that has a profound impact on the health and well-being of those affected.
“Together with Pfizer, we look forward to providing sickle cell disease education that can underscore the importance of improving quality of care in the community,” Chavis said.
Snyder, whose work at Georgia State University includes researching and advocating for the sickle cell disease community, said it’s important that everyone is educated.
“We have to continue to study on what works and doesn’t work for people,” she said.
Francis-Gibson said conversations must take place in and outside the home. “Sickle Cell Disease is personal for me because I have a family member who died from sickle cell disease when I was in high school,” Francis-Gibson said.
“We never discussed it and when I was offered my current position I knew it was my calling because if my own family isn’t discussing sickle cell disease, I knew that other families weren’t discussing it either,” she said.
In December, a bi-partisan bill aimed at fighting sickle disease was signed into law by President Donald Trump.
The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018 was introduced by Sens. Cory Booker, D-N.J., and Tim Scott, R-S.C., in February 2018 and passed in the Senate in October.
The bill also reauthorizes a current sickle cell disease prevention and treatment program for nearly $5 million each year over the next five years.
“Even though sickle cell disease is the most common inherited blood disorder in our country, research and treatment lags behind that of other chronic illnesses,” Booker said in a statement.
“Our legislation will help find new ways to improve the lives of people suffering from sickle cell disease. It’s time we start treating sickle cell disease as a serious and debilitating illness and allocate adequate resources to monitoring, researching, and treating it,” he said.
Francis-Gibson said advocacy for funding the bill is still needed.
“It’s important everyone comes out during National Sickle Cell Advocacy Day and join me on Capitol Hill because when I’m speaking to the legislators, it’s much better when they look and see all of the people behind me,” she said.
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Newswire : NNPA, Pfizer release groundbreaking poll about sickle disease in the Black community

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By Stacy M. Brown (NNPA Newswire Contributor)

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 NNPA President and CEO Benjamin F. Chavis, Jr. (far left) and NNPA Chairman Dorothy Leavell (3rd from left) joined researchers from Howard University and Pfizer officials to release a new poll on sickle cell disease at the National Press Club in Washington, D.C. (Freddie Allen/AMG/NNPA)
A new poll about sickle cell disease (SCD), presented by the National Newspaper Publishers Association (NNPA) and Pfizer revealed that while the majority of respondents were familiar with the illness, less than 40 percent realized that it disproportionately affects people of African descent.
The NNPA is a trade group that represents more than 200 African American-owned community newspapers operating in the United States. Earlier this year, Pfizer partnered with the NNPA to increase awareness about SCD in the Black community and to encourage greater participation in clinical trials for treatments involving the disease.
The groundbreaking poll also helped to dispel one of the long-held myths about the negative perception of medical professionals in the Black community.
The poll revealed that, despite long-standing historical perceptions of mistrust in medical professionals by the Black community, 91 percent of respondents indicated that they believe health care professionals are trustworthy.
Seventy-nine percent of respondents had positive or neutral attitudes toward sickle cell disease (SCD) trials and a majority indicated a willingness to participate in future clinical trials for SCD, given appropriate knowledge and recommendations from health care professionals.
“Our core belief is that every patient counts, especially when it comes to rare disease,” said Michael Goettler, the global president of Pfizer’s Rare Disease unit. “When you have a rare disease, often you feel lonely and your physician may not be able to help you.”
Goettler noted that the poll results provide a basis for Pfizer to seek more detailed assistance for sufferers.
Even though the greatest burden for SCD, the report said that there’s limited research regarding African-Americans’ knowledge and thoughts about clinical trials that study the health impacts of the illness, the report said.
“These poll findings will give our readers an in-depth understanding of how sickle cell disease is perceived by African-Americans,” said Dr. Benjamin F. Chavis, Jr., president and CEO of the NNPA. “With this knowledge from the dedicated research team at Howard University, and through our collaboration with Pfizer, we can spur meaningful conversation and assess the best ways to improve disease education for those impacted in our communities.”
Dorothy Leavell, the chairman of the NNPA, said that she’s pleased to be a part of a group delivering “good news,” as well as the research that Pfizer continues to embark upon, on behalf of SCD patients.
SCD is a lifelong and debilitating disorder that affects red blood cells and it’s the most common inherited blood disorder in the U.S. Most people who live with SCD are of African descent and the disease occurs in one out of 365 African-American births.
The median age of death for sickle cell disease patients in America hovers in the mid-40s, said Dr. Kevin Williams, the chief medical officer for Pfizer’s Rare Disease unit. Williams also writes a regular column about SCD for NNPA, titled “Ask Dr. Kevin.”
Williams said that the insight form the poll will not only help researchers determine how to further enhance disease education and awareness, but will also help Pfizer educate SCD patients and their families about the importance of clinical trials in bringing novel treatment options to market for those in need.
The survey was conducted by researchers at Howard University, who made 31,934 telephone calls for the poll that was conducted between June 15 and July 15. A total of 741 individuals aged 20 to 70 living across the country, who identified as being of African-American ethnicity, responded to the survey.
The majority of respondents (79 percent) said they understood the importance of disease education and expressed the need for additional current information, specifically regarding pain relief, clinical trials and progress toward better treatment or a cure.
“It’s not surprising for us that a majority of our participants understood and were previously aware of sickle cell disease,” said Dr. Terri Adams, an associate dean in the College of Arts and Sciences at Howard University. “The overwhelming majority understood that it’s a disease, a blood disorder.”
Adams continued: “There was a willingness to participate in [SCD] clinical trials, however, 82 percent had very or somewhat negative attitudes toward clinical trials in general, so there’s still a general mistrust in clinical trials.”
Researchers and officials at Pfizer and the NNPA each said that they hope to continue to educate patients, family members and primary care doctors about SCD clinical trials.
“Close to 20 percent said they were unsure of how it was inherited and this presents a problem,” Adams said. “If you don’t know how it’s inherited, you may be putting your offspring at risk.”