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Ask Dr. Kevin: Clinical Trials are the Foundation for Scientific Innovation
NNPA NEWSWIRE — As you may have heard, my team at Pfizer recently experienced a significant disappointment. Our phase 3 trial for rivipansel, a potential treatment for the debilitating vaso-occlusive crises (VOCs) endured by virtually every person with sickle cell disease (SCD), did not meet its study endpoints. Both professionally and personally, this news was hard to hear, especially knowing that people with SCD have such limited treatment options available to them. However, even though the study didn’t turn out as we had hoped, the good news is that the rivipansel program greatly advanced our understanding of SCD and VOCs, which will be important for future SCD research programs and drug development.
By Dr. Kevin Williams, Chief Medical Officer for Rare Disease at Pfizer
The “Ask Dr. Kevin” series is brought to you by Pfizer Rare Disease in collaboration with the National Newspaper Publishers Association (NNPA) to increase understanding of sickle cell disease.
Dr. Kevin Williams is the Chief Medical Officer for Rare Disease at Pfizer where he leads a Medical Affairs organization of approximately 150 medical colleagues around the globe. 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 rare diseases, such as sickle cell disease, in the African American community.
As you may have heard, my team at Pfizer recently experienced a significant disappointment. Our phase 3 trial for rivipansel, a potential treatment for the debilitating vaso-occlusive crises (VOCs) endured by virtually every person with sickle cell disease (SCD), did not meet its study endpoints. Both professionally and personally, this news was hard to hear, especially knowing that people with SCD have such limited treatment options available to them. However, even though the study didn’t turn out as we had hoped, the good news is that the rivipansel program greatly advanced our understanding of SCD and VOCs, which will be important for future SCD research programs and drug development.
As I’ve written about before, SCD is the most common inherited blood disorder, and it disproportionately affects people of African descent[i]. VOCs, one of the most common complications of SCD, are marked by extreme pain resulting from sickle-shaped red blood cells clumping together in the bloodstream[ii]. The standard of care for patients experiencing these pain crises has remained largely unchanged since the first report of SCD in 1910, and is restricted mostly to treating disease symptoms, like the use of opioids for pain management. Just last month, Novartis was granted FDA approval for a treatment to reduce the frequency of VOCs experienced by patients; however, there still stands a greater need for therapies that target the root cause of these painful episodes.
The clinical trial for rivipansel may have come to an end; however, the one thing that working in SCD and collaborating with the NNPA and SCD-focused patient groups over the last several years has taught me is that this community is strong. Their strength inspires me and my team every day and fuels our passion for our work in advancing the scientific research of rare diseases like SCD.
In this article, I’d like to share a little more about the importance of innovation in rare diseases and answer some common questions about the role clinical trials play as the foundation for moving medical innovation forward.
Why are clinical trials important?
Cutting-edge research and clinical trials are key to making an impact for patients and are essential to the development of new treatments. These studies also deepen our understanding of diseases, especially rare diseases, such as SCD, where few advances have been made. For rare diseases in particular, only 5% of diseases have an FDA-approved treatment[iii], so there is a lot of work to be done in this area.
At their core, clinical trials are designed to produce high-quality data that will translate into a better understanding of the treatments that work best for certain diseases and people. Given their crucial role in medical science, clinical trials are highly regulated and conducted using high-quality scientific and ethical standards to ensure the safety of participating patients.
Are there potential challenges associated with clinical trials?
The biggest challenge is that a clinical trial may fail, even after decades of research aimed at uncovering a treatment breakthrough. While no one likes to hear a clinical trial didn’t meet its goals, especially people in need of new treatment options, researchers are unfortunately unable to anticipate the end results of these studies in advance.
However, even though we can’t be sure of the results, it’s still critical for this research to happen to bring new treatment advances to those in need. Did you know that for every approved medicine, there are countless others that don’t pass through the grueling clinical trial and regulatory processes? A recent report found that the likelihood of drugs moving from clinical phase to approval is only 9.6%[iv]. Moreover, even if an investigational therapy is backed by promising data, it can take around 12 years or longer for it to gain approval.
Another challenge can be enrollment of volunteers to participate in clinical trials. Historically, recruitment obstacles have been a barrier in SCD research. However, a poll conducted, as a part of Pfizer and the NNPA’s collaboration, found that a majority of respondents had positive or neutral attitudes toward SCD clinical trials, and furthermore, they indicated a willingness to participate in them if provided the appropriate information. These results are encouraging and suggest people are becoming more inclined to participate in clinical trials for hard-to-treat diseases like SCD.
What have you learned about clinical trials during your time at Pfizer?
Pfizer strives to accelerate the development and delivery of groundbreaking medicines and the dedication, talent and resources that support our clinical trials can’t be captured in a few words. However, as I’ve said earlier, advancing research and conducting clinical trials comes with the unfortunate reality of not always being successful.
The news that our trial for rivipansel didn’t achieve its goals was disappointing, especially for the SCD community who is eagerly awaiting new therapies for VOCs. That said, we are channeling this loss into renewed energy and making it our purpose to learn from it. We are in the process of reviewing the trial data closely to ensure our findings can help inform and shape future SCD programs.
Regardless of the outcomes, I want to stress again that more trials in the rare disease space, particularly for SCD, are desperately needed. I am confident in saying our steadfast commitment to this community will continue, as we work tirelessly to look for new ways to continue advancing care.
About Dr. Kevin Williams
Dr. Kevin Williams is the Chief Medical Officer (CMO) for Pfizer Rare Disease. In this role, he leads a Medical Affairs organization of approximately 150 medical colleagues around the globe supporting Pfizer’s efforts and portfolio in Rare Disease. Dr. Kevin joined Pfizer in January 2004 as a Director of Regional Medical & Research Specialist working in the HIV disease area. After moving into a Team Leader position in July 2005, he served in various leadership roles during his career at Pfizer. Dr. Kevin moved into his current Rare Disease CMO position in May 2016.
Dr. Kevin received his medical degree from the UCLA School of Medicine and is board certified in Internal Medicine. Following a 2-year fellowship in Health Services Research at UCLA and a brief academic career as an Instructor of Medicine at the UCLA School of Medicine, he spent 8 years in private practice caring for HIV-positive patients while maintaining an academic appointment at the UCLA School of Medicine as an Assistant Clinical Professor of Medicine. In addition to his medical degree, Dr. Kevin has a Master’s in Public Health from the UCLA School of Public Health and a Juris Doctorate from Harvard Law School.
Keep up to date on Pfizer’s Rare Disease efforts by visiting our page here. You can also follow Pfizer on Facebook and Twitter.
[i] Serjeant GR. One hundred years of sickle cell disease. Br J Haematol. 2010;151(5):425-429.
[ii] American Family Physician. “Approach to the Vaso-occlusive Crisis in Adults with Sickle Cell Disease.” https://www.aafp.org/afp/2000/0301/p1349.html.
[iii] Global Genes. “Rare Disease: Facts and Statistics.” https://globalgenes.org/rare-diseases-facts-statistics/
[iv] Biotechnology Innovation Organization (BIO). “Clinical Development Success Rates 2006-2015.” https://www.bio.org/sites/default/files/Clinical%20Development%20Success%20Rates%202006-2015%20-%20BIO,%20Biomedtracker,%20Amplion%202016.pdf.
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OP-ED: Oregon Bill Threatens the Future of Black Owned Newspapers and Community Journalism
BLACKPRESSUSA NEWSWIRE — Nearly half of Oregon’s media outlets are now owned by national conglomerates with no lasting investment in local communities. According to an OPB analysis, Oregon has lost more than 90 news jobs (and counting) in the past five years. These were reporters, editors and photographers covering school boards, investigating corruption and telling community stories, until their jobs were cut by out-of-state corporations.

By Dr. Benjamin F. Chavis, Jr.
President and CEO, National Newspaper Publishers Association
For decades, The Skanner newspaper in Portland, the Portland Observer, and the Portland Medium have served Portland, Oregon’s Black community and others with a vital purpose: to inform, uplift and empower. But legislation now moving through the Oregon Legislature threatens these community news institutions—and others like them.
As President and CEO of the National Newspaper Publishers Association (NNPA), which represents more than 255 Black-owned media outlets across the United States—including historic publications like The Skanner, Portland Observer, and the Portland Medium—l believe that some Oregon lawmakers would do more harm than good for local journalism and community-owned publications they are hoping to protect.
Oregon Senate Bill 686 would require large digital platforms such as Google and Meta to pay for linking to news content. The goal is to bring desperately needed support to local newsrooms. However, the approach, while well-intentioned, puts smaller, community-based publications at a future severe financial risk.
We need to ask – will these payments paid by tech companies benefit the journalists and outlets that need them most? Nearly half of Oregon’s media outlets are now owned by national conglomerates with no lasting investment in local communities. According to an OPB analysis, Oregon has lost more than 90 news jobs (and counting) in the past five years. These were reporters, editors, and photographers covering school boards, investigating corruption, and telling community stories, until their jobs were cut by out-of-state corporations.
Legislation that sends money to these national conglomerate owners—without the right safeguards to protect independent and community-based outlets—rewards the forces that caused this inequitable crisis in the first place. A just and inclusive policy must guarantee that support flows to the front lines of local journalism and not to the boardrooms of large national media corporations.
The Black Press exists to fill in the gaps left by larger newsrooms. Our reporters are trusted messengers. Our outlets serve as forums for civic engagement, accountability and cultural pride. We also increasingly rely on our digital platforms to reach our audiences, especially younger generations—where they are.
We are fervently asking Oregon lawmakers to take a step back and engage in meaningful dialogue with those most affected: community publishers, small and independent outlets and the readers we serve. The Skanner, The Portland Observer, and The Portland Medium do not have national corporate parents or large investors. And they, like many smaller, community-trusted outlets, rely on traffic from search engines and social media to boost advertising revenue, drive subscriptions, and raise awareness.
Let’s work together to build a better future for Black-owned newspapers and community journalism that is fair, local,l and representative of all Oregonians.
Dr. Benjamin F. Chavis Jr., President & CEO, National Newspaper Publishers Association
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Hate and Chaos Rise in Trump’s America
BLACKPRESSUSA NEWSWIRE — Tactics ranged from local policy manipulation to threats of violence. The SPLC documented bomb threats at 60 polling places in Georgia, traced to Russian email domains.

By Stacy M. Brown
Black Press USA Senior National Correspondent
The Southern Poverty Law Center has identified 1,371 hate and antigovernment extremist groups operating across the United States in 2024. In its latest Year in Hate & Extremism report, the SPLC reveals how these groups are embedding themselves in politics and policymaking while targeting marginalized communities through intimidation, disinformation, and violence. “Extremists at all levels of government are using cruelty, chaos, and constant attacks on communities and our democracy to make us feel powerless,” said SPLC President Margaret Huang. The report outlines how hard-right groups aggressively targeted diversity, equity, and inclusion (DEI) initiatives throughout 2024. Figures on the far right falsely framed DEI as a threat to white Americans, with some branding it a form of “white genocide.” After the collapse of Baltimore’s Francis Scott Key Bridge, a former Utah legislator blamed the incident on DEI, posting “DEI = DIE.”
Tactics ranged from local policy manipulation to threats of violence. The SPLC documented bomb threats at 60 polling places in Georgia, traced to Russian email domains. Similar threats hit Jewish institutions and Planet Fitness locations after far-right social media accounts attacked them for trans-inclusive policies. Telegram, which SPLC describes as a hub for hate groups, helped extremists cross-recruit between neo-Nazi, QAnon, and white nationalist spaces. The platform’s lax moderation allowed groups like the Terrorgram Collective—designated terrorists by the U.S. State Department—to thrive. Militia movements were also reorganized, with 50 groups documented in 2024. Many, calling themselves “minutemen,” trained in paramilitary tactics while lobbying local governments for official recognition. These groups shared personnel and ideology with white nationalist organizations.
The manosphere continued to radicalize boys and young men. The Fresh & Fit podcast, now listed as a hate group, promoted misogyny while mocking and attacking Black women. Manosphere influencers used social media algorithms to drive youth toward male-supremacy content. Turning Point USA played a key role in pushing white nationalist rhetoric into mainstream politics. Its leader Charlie Kirk claimed native-born Americans are being replaced by immigrants, while the group advised on Project 2025 and organized Trump campaign events. “We know that these groups build their power by threatening violence, capturing political parties and government, and infesting the mainstream discourse with conspiracy theories,” said Rachel Carroll Rivas, interim director of the SPLC’s Intelligence Project. “By exposing the players, tactics, and code words of the hard right, we hope to dismantle their mythology and inspire people to fight back.”
Click here for the full report or visit http://www.splcenter.org/resources/guides/year-hate-extremism-2024.
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