Thursday, September 24, 2020

COVID-19's Impact on Rural Health Services Providers

By: A. Toni Young, Founder & Executive Director, Community Education Group

In partnership with Cardea and TruEvolution, Community Education Group (CEG) is spearheading an effort to learn how COVID-19 is impacting Rural Health Services Providers (RHSPs) so they can better facilitate conversations with policymakers and advocate to expand access to resources to support client care. COVID-19 is presenting a unique set of challenges in rural communities as local providers try to tackle HIV, viral hepatitis, and substance use disorder. 

Our Vlog summarizes the work being done by CEG to address these disparities in rural communities.

A. Toni Young

To view the Vlog, visit https://www.adapadvocacy.org/urls/CANN_Video-Blog.mp4.

About Community Education Group. The Community Education Group (CEG) is a 501(c)3 not-for-profit organization working to eliminate disparities in health outcomes and improve public health in disadvantaged populations and under-served communities. CEG accomplish this by conducting research, training community health workers, educating and testing people who are hard to reach or at risk, sharing our expertise through national networks and local capacity building efforts, and advocating for practical and effective health policies that lead to social change. CEG has offices in both Washington, DC, and Shepherdstown, WV, and has recently partnered with TruEvolution, Inc. (Riverside, CA) to found the Rural Health Service Providers Network which advocates on behalf of organizations providing essential services to clients living in rural America. Donate to Community Education Group.

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.  

Thursday, September 17, 2020

Black, Gifted & COVID-19 Free

By: Guy Anthony, President/CEO, Black, Gifted & Whole Foundation

Recently, as I scrolled through the news, I froze reading a headline: “Only 6% of coronavirus deaths caused by COVID-19.” 

Suddenly unable to hear, see, or feel my surrounding, I was taken back to March on the day I began experiencing COVID-19 symptoms. I was taken back to three weeks that followed. I was taken back to the anxiety and the immense feeling of the unknown. 

I was symptomatic when I was self-diagnosed. Every day I dreaded the possibility of waking up to the realization that I was becoming sicker by the minute. Would my symptoms be taken seriously? Would I be able to see a doctor before my symptoms got too severe? Would a hospital treat me with the same care knowing I have a preexisting condition?

I am a Black, queer, HIV-positive man living in America. I have lived with HIV for 15 years. I have learned that society is not built to protect me. Laws are not made to protect me. Healthcare is not built to protect me. 

When the pandemic started, I immediately became concerned about getting food and my daily medications. In order to keep my immune system healthy, more so than the average person, I rely on fueling my body with healthy foods and religiously taking my prescribed medicine. I also know that healthcare in the United States is segregated. As a Black, queer, HIV-positive man, I am almost guaranteed to get inadequate healthcare compared to my white, heterosexual, HIV negative male counterparts. Black men are more likely than white men to have their pain ignored or deemed not severe. Queer men are more likely than heterosexual men to be refused care and abused in medical settings. HIV positive patients are more likely than HIV negative patients to have other health conditions go undiagnosed or untreated.

I live daily in fear that being Black, being queer, and being-HIV positive negatively influence the healthcare I receive. As doctors and medical professionals dealt with an influx of COVID-19 patients, priority was given to patients who were the most ill. I worried that by the time I got “bad enough” to receive care, my HIV status and weakened immune would complicate my care, and it would be too late. 

Fortunately, after three weeks, my immune system fought off the virus. I tested negative. A small sense of relief washed over me. But I still carry the weight of knowing my Blackness, my queerness, and my HIV-status puts me at risk when I am walking down the street, when I tell someone who my partner is, and when I develop any illness in the future, including a possible recurrence of COVID-19. 

After a few minutes of staring at the headline that brought me back to March, I grounded myself. As I sat with the article proclaiming just 6% of coronavirus deaths are caused by COVID-19, I knew this number would be used to minimize deaths of people similar to me who were HIV-positive at the time of their death. HIV may have complicated their deaths, but if it were not for COVID-19, they would still be alive. 

In light of what I experienced, we created the The BLACK BOX Care Program to address the myriad of concerns affecting Black queer students during the COVID-19 global pandemic. Many student have been displaced and are in need of tangible support.  Each box varies and is stocked full of our 5-year anniversary merchandise, offerings from Black Queer authors such as Yolo Akili and George Johnson, and additional contributions from Black Queer entrepreneurs like The Blairisms, THRIVE SS, The Mindful Techie & The LAMDA Lounge. We have already sent out 50 Blackboxes to students in need.

The future of the COVID-19 pandemic is unclear. No one knows precisely when it might end. There is a possibility that I can be infected again. Thousands of people, similar to me, are dying weekly. However, I realize while it can be easy to live in immense fear and despair, I look towards the community, the encouragement, and the positivity at the Black, Gifted, and Whole Foundation. It gives me the motivation and inspiration to keep moving forward. 

About Black, Gifted & Whole Foundation: The Black, Gifted & Whole Foundation (BGW) represents a revolutionary attempt to improve the collective narrative of Black Queer folx. Their mission is to empower, educate and mobilize Black Queer folx by acknowledging, celebrating and affirming their whole selves. BGW believes that Black Queer folx are multifaceted and deserve innovative and meticulously researched approaches when being engaged. They believe that Sexual Health + Higher Education + Access to Resources can drastically improve the trajectory of their lives. BGW — conduct intake of — young Black Queer folx while in High School, College, or Graduate School, assess their needs, aspirations and sexual health awareness and provide them with financial and emotional support. Donate to Black, Gifted & Whole Foundation.

Black, Gifted & Whole

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.  

Thursday, September 10, 2020

Together, We Can Lower Out-of-Pocket Costs & Increase Access to Healthcare

By: Amy Niles, Executive Vice President, PAN Foundation 

Your voice as a patient advocate, and the voices of the patients you support, are critically important when it comes to health policy. You have experiences to share, perspectives to provide and valuable input on proposed policy solutions. Healthcare policy is only effective if it addresses patient needs and improves access to and affordability of treatment. 

That is why the PAN Foundation has launched its online advocacy action center – to provide a central place for information about effective ways to communicate with elected officials, and importantly, to be a key destination for campaigns and advocacy initiatives focused on improving access to and affordability of treatment. 

The Patient Pays Less
Photo Source: PAN Foundation

Our first campaign addresses the need to lower out-of-pocket costs for prescription medications in Medicare Part D. In one click, we make it easy for you or your constituents to send an email to their elected officials, letting them know that relief from out-of-pocket costs for millions of Americans is desperately needed – NOW! Information about this campaign is included below. 

My ask of you?

As soon as you can, please encourage your patient communities to visit PAN’s advocacy action center, learn more about this campaign, and take immediate action by writing their members of Congress. It is easy, important, and needed as we head into the fall months.

If you need any assistance or have ideas for encouraging patients to share their stories, and their voices, do not hesitate to reach out to me. Learn more at https://www.panfoundation.org/become-an-advocate/.

Thanks, as always, for all you do. 

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

Thursday, September 3, 2020

COVID-19 Vaccination Clinical Trials MUST Include PLWHAs

By: Sarah Hooper,  intern, ADAP Advocacy Association, and rising senior at East Carolina University

As the COVID-19 pandemic enters its ninth month, the world is still struggling to create a vaccination and find medication to treat the virus properly. President Trump has been saying for months that the vaccine trials and research are going well, and America should expect a vaccination by the end of the year. While this sentiment is hopeful (and considered by many to be driven by politics and not science), it does exclude the major process involved in vaccination trials: testing trials, which can take months to years. 

COVID-19 Vaccine
Photo Source: health management.com

Vaccination trials have begun around the world but are a slow process. One vital aspect of these trials is testing and planning for the immunocompromised population, who are often most affected by the diseases typically vaccinated for. In a vaccination trial for COVID-19 by Moderna Inc., the biotechnology company initially excluded people living with HIV from COVID-19 vaccine trials (Smart Brief).

After pressure and lobbying from HIV advocates, the biotech company expanded their vaccine trials to include HIV positive persons. 

“Moderna Inc. is committed to working with all communities who could benefit from our COVID-19 vaccine. While we had always planned to evaluate mRNA-1273 in people living with HIV (PLWH) in a separate study, as we are doing for other participant groups, we have heard the preference of the community to be included in the ongoing Phase 3 study in the U.S.,” Moderna Inc. shared on their Twitter account on Aug. 5. (Twitter).

Moderna
Photo Source: Moderna

Those with underlying health conditions such as HIV and those above the age of 50 are at highest risk for COVID-19. According to the U.S. Centers for Disease Control & Prevention (CDC), nearly half of people in the United States who are diagnosed with HIV are 50 and older. (CDC)

As COVID-19 is a relatively new virus, the long-term effects of it are unknown on those with HIV. As of now, there is no evidence to suggest those with HIV have an increased risk of infection and severity of illness if they were to contract COVID-19, according to the Journal of the International AIDS Society. 

“It is thought that people living with HIV who have achieved viral suppression through antiretroviral treatment and do not have a low CD4 count will be affected by COVID-19 in a similar way to what a person not living with HIV would be, based on other coronavirus-caused disease outbreaks such as SARS (caused by SARS-CoV-1) and MERS (caused by MERS-CoV), where only a few cases of mild disease among people living with HIV were reported,” said JIAS. (JIAS) 

In an opinion article written for the website Devex in late May of this year, Mitchell Warren makes an excellent observation about the connection between the COVID-19 vaccination trials and what we can learn from previous experience with the HIV responses around the world. 

“As we know so well from over 40 years of experience in the HIV response, developing and delivering prevention and treatment options at scale is essential to containing an epidemic. But no durable and sustainable end to any epidemic is possible without a vaccine,” Warren said. (Devex)

Vaccine trials are expected to continue through the end of the year and into 2021, until a proper vaccination is discovered for COVID-19. Until then, the CDC recommends all those with underlying health conditions such as HIV take extra precautions while going out in public and conversing with others. It is equally important the PLWHA not be excluded from the clinical trials for any COVID-19 vaccination

References:

  • Moderna. (2020, August 05). Today, we are sharing an important update about our protocol for the Phase 3 COVE Study of mRNA-1273, our vaccine candidate against COVID-19. pic.twitter.com/jigTXUi9v2. Retrieved August 26, 2020, from https://twitter.com/moderna_tx/status/1291056643464192001?ref_src=twsrc^tfw|twcamp^tweetembed|twterm^1291056643464192001|twgr^
  • People with HIV to join Moderna COVID-19 vaccine trial. (2020, August 10). Retrieved August 26, 2020, from https://www.smartbrief.com/branded/D4C8EBAD-9C67-4D55-869C-CC2C8F893F9E/83E1E967-BCC2-4A2E-AF19-D2FCF2C8EBF2
  • Warren, M. (2020, May 27). Opinion: To accelerate search for COVID-19 vaccine, look to HIV and act globally. Retrieved August 26, 2020, from https://www.devex.com/news/opinion-to-accelerate-search-for-covid-19-vaccine-look-to-hiv-and-act-globally-97267
  • What to Know About HIV and COVID-19. (n.d.). Retrieved August 26, 2020, from https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/hiv.html
  • What you need to know. (n.d.). Retrieved August 26, 2020, from https://www.iasociety.org/covid-19-hiv
Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.