Newswire : NNPA, Pfizer release groundbreaking poll about sickle disease in the Black community

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.”

National Newspaper Publishers Association calls for appointment of a Special Federal Prosecutor on Racially Motivated Police Killings

 

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Washington, D.C. — Today, the National Newspaper Publishers Association (NNPA), the nation’s largest trade association of African American-owned newspapers and media companies, issued an urgent call and demand that President Barack H. Obama and U.S Attorney General Loretta Lynch appoint a Special Federal Prosecutor in the wake of the police killings of Alton Sterling in Baton Rouge, Louisiana, and Philando Castile in Falcon Heights, Minnesota.  The NNPA also expresses sincere condolences to the families of the police officers who were unjustly killed in Dallas, Texas.
“The killings of African Americans in Louisiana and Minnesota during the past week represent an escalating national pattern  of fatal police  killings that appear to be racially motivated.  These incidents are not isolated local tragedies, but are the terrible growing manifestations of a deadly national system of racism in the criminal justice system that needs to be effectively challenged and changed,” said Dr. Benjamin F. Chavis, Jr., the president and CEO of the NNPA. “There are, today, too many African American families and communities that continue to endure police brutality and violence across the United States. This is a national crisis that demands immediate federal intervention to both investigate and to prosecute police officers, who continue to commit these wanton racially motivated killings.”
Chavis continued: “We, therefore, demand that a Special Federal Prosecutor be immediately appointed by the United States Department of Justice. To date, unfortunately, local investigations and prosecutions have been ineffective and have not insured equal justice. The Special Federal Prosecutor has to be independent and impartial. We have heard from many of our NNPA member publishers throughout the nation who all expressed profound disgust and moral outrage about these brutalities. We will not be silent in the face of these continued injustices. We demand action by the federal government now.”
The reform of the criminal justice system in America requires more intellectual honesty in the national dialogue about race, inequality and injustice.  The NNPA will engage and participate in this dialogue as the movement for reform and social change unfolds.
The NNPA represents 209 African American owned newspapers based in 32 states and known as the “Voice of Black America” that reaches 20.l million readers per week with national offices located in Washington, D.C. Please visit http://www.NNPA.org to learn more about the NNPA and go to http://www.BlackPressUSA.com to check out news and commentary about the Black community.

Follow the money: Minority vendors raise questions about government advertising spending

By Stacy M. Brown (NNPA News Wire
Contributing Writer)

NNPA President Ben Chavis addresses Capitol Hill press  conference

NNPA President Ben Chavis addresses Capitol Hill
press conference (Freddie Allen/AMG/NNPA)

The federal government spends about $1 billion on advertising services, but history continues to show that small businesses and local and minority-owned media companies are mostly left out. On Wednesday, March 23, as part of its ongoing series on Supplier Diversity, the FCC’s Office of Communications Business Opportunities hosted a roundtable discussion on diversity and government advertising practices. Moderated by Thomas Reed, the director of the FCC’s Office of Communications Business Opportunities, the event also included commentary from James Winston, the president of the National Association of Black Owned Broadcasters, Melody Spann Cooper, Steve Roberts, Sherman Kizart, and other experts from the broadcasting industry who examined the federal government’s interaction with diverse communities and how current advertising practices reach those same communities.
“We wanted to have a more laser-like focus on federal advertising. The congressional research service has found in recent years the federal government spends close to $1 billion annually on advertising services,” Reed said in opening the roundtable discussion.
“The focus of the meeting is an examination of how, where, and in many instances, why this money, these dollars, are being spent and how we might begin to expand the pool of vendors who assist the government and getting out the message,” he said.
While public documents reveal who is spending the money, they don’t always reveal who is on the receiving end of those contracts, Reed added. “Experience tells us that local media, small companies, women and minority-owned media are not well-represented,” he said.
The meeting was viewed as a critical beginning step in minority-owned media being considered when the federal government and its agencies seek to advertise.
Earlier this month, leaders from the National Newspaper Publishers Association and the National Association of Hispanic Publications – which combined publish more than 600 newspapers to over 30 million readers – were joined by D.C. Rep. Eleanor Holmes Norton in calling for an examination of government advertising practices.
It’s widely understood that government advertising covers a variety of subjects, Reed said, noting public service announcements, federal job openings, competition for federal contracts, and even the sale of surplus government property.
He said federal agencies use numerous platforms to educate the public about their core services including using television, radio, and now, increasingly, social media outlets like Facebook and Twitter. However, the lack of advertising by federal agencies in Black media can be felt in radio as well, Winston said.
“We find ourselves very challenged to maintain the success of our existing stations. Your success depends on getting advertising dollars and, in 2012, the Congressional Research Service did a report that at the time showed that the federal government agencies were spending about $500 million a year on commercial advertising,” Winston said. “That number is now closer to $1 billion and the report showed that the largest commercial advertiser in the federal government is the Department of Defense. And, so we’ve found that a great deal of money is being spent but there’s very little information about where that money is going.”
Winston added: “The agencies pretty much do the same thing, they all have major contracts with one huge advertising agency, usually a ‘Madison Avenue’ advertising agency.”
Kenyata Wesley, who represented the Department of Defense during the discussion, said she attended to help explain the procurement process and to help minority media members to better navigate the acquisition process.“We do have a very robust media program, about $300 million spent in the media community,” Wesley said. “Hopefully, we can walk away with solutions.”
Chanel Bankston-Carter, the director for the Department of Veterans Affairs, said her agency is committed to working with veteran-owned and small businesses, and they’re looking at opportunities for procurement. She said the roundtable is “Truly an opportunity to share ideas, strategies and come together to develop a partnership that will benefit the small business community.”
“My sole purpose is to work on procurement opportunities for the small business community,” Bankston-Carter said, noting that the Veterans Affairs is the only federal agency that has a verification program. “There are times advertising has opportunities to be more diverse and we do have a lot of opportunity for marketing and advertising and we do use that. So, I would just love to say that we are open.”
During the conference, Reed reiterated the purpose of the sit down.“It’s not to indict, but to gain a better understanding of the process, why federal advertising dollars are not more broadly spent and how women and minority-owned media companies can improve government advertising to underserved communities,” he said.
The conference was held just two weeks after Norton joined the call for more accountability in government advertising spending with minority-owned publications. “I’m requesting a report from an objective arm of the federal government, the GAO. We’re asking them to conduct a study of the federal agencies whose outreach is to people of color,” said Norton on Friday, March 11.
“We don’t want our federal agencies to forego their mandate and responsibilities. There is a mandate to engage small businesses. We want to discuss if that is, in fact, taking place. There’s no more authentic or trusted way to do so than to engage the Black and Hispanic Press.”Norton and the accompanying Black and Latino publishers said no one can accurately pinpoint a dollar figure of what the federal government spends.“We have no sense of the numbers,” Norton said. “If you don’t even know what they do, you can’t know what they spend. We want to know how much they spend and with which press. We don’t even know if they have a strategy.”