During COVID-19, Strength is Knowing that its Okay Not to be Okay

By: Khadijah Abdullah, Founder & Executive Director, Reaching All HIV+ Muslims in America

In May, my Uncle passed away from COVID-19. Grief hit our family hard, especially his youngest daughter, my cousin Erica. She had just lost her older brother to a heart attack a year prior. She felt the weight of their deaths on her shoulders. 

Unfortunately just a couple weeks ago, on October 9th she unexpectedly passed away as well. She leaves behind a 4 year old son who is a cancer survivor and requires special care. As you can imagine my family is devastated. 

Grief hits differently when it is someone you love. We never know the day nor the hour, but we know we will all die someday. But when it happens, it still hurts.

When COVID-19 first hit, many of us did not understand its severity until we lost someone close and/or the numbers increased drastically over a short period of time. The news constantly fed us information about COVID-19 and many retreated to their homes and sealed their front doors shut.

But what about Black, Brown and Indigenous people?

We are hit the hardest by COVID-19.

According to the Centers for Disease Control and Prevention (CDC), factors that contribute to risk of us getting sick with COVID-19 are: discrimination, healthcare access and utlization, occupation, educational, income, wealth gaps, and housing. 

Many of us do not have the luxury of sheltering in place. If we did, we would not be able to eat or feed our families. We have to keep a roof over our heads. We can’t afford to just simply not work. We don’t have the luxury of wealth. Essential workers often times falls on the backs of Black, Brown and Indigenous Folx.

COVID-19 has had and continues to have an impact on many families across the world, including my own. In the US alone, over 8 million people tested positive for COVID-19 thus far. As the Executive Director of Reaching All HIV+ Muslims In America (RAHMA), I have seen the effects it has on those we serve as well, including our team. Moving to a virtual world without warning has caused Zoom fatigue and attempting to find balance in a constantly changing world. Mental health is of the utmost importance and we just strive to do the best we can. Sometimes this looks like taking time off to regroup and that’s okay. 

Strength is knowing that its okay not to be okay. We are human.

We have also taken a few steps to provide relief and support to Black, Indigenous and People of Color (BIPOC) affected by COVID-19. In recognition of National Faith HIV & AIDS Awareness Day (NFHAAD), we led a town hall titled: “Get out and Vote: HIV & COVID-19 are on the Ballot.” This town hall covered the importance of voting, how our lives depend on it and why we must appoint elected officials who actually value our lives. We invited speakers from the Black AIDS Institute, Positive Women’s Network, Dr. Abdul El-Sayed and more.

Due to my personal experiences with COVID-19 and wanting to help amplify prevention efforts as much as I can, I have also become a Faith Ambassador with the COVID-19 Prevention Network. Our goal is to collaborate with BIPOC faith communities, address the effects COVID-19 has on us, disparities, prevention efforts and how we can respond effectively.  

COVID-19 is not going anywhere anytime soon. This is a harsh reality we have to face. In order for us to come out of this alive, we have to take care of self. COVID-19 is an invisible force to be reckoned with and we have to be equipped with knowledge to defend ourselves. 

Our lives depend on it. 

About Reaching All HIV+ Muslims in America: RAHMA addresses HIV, AIDS, Female Genital Mutilation/Cutting (FGM/C), Sexual Health and Gender-Based Violence (GBV) in faith communities through education, advocacy, and empowerment. Their programs include a retreat for HIV+ Muslims and their allies, sexual health & HIV trainings and development og a virtual FGM/C toolkit for survivors and health care providers, created in collaboration with the George Washington University, Milken School of Public Health hosted at https://fgmtoolkit.gwu.edu. RAHMA is also the founder of National Faith HIV & AIDS Awareness Day, which unites Muslim, Christian, Jewish, Buddhist, Sikh, Hindu and Baha'i faiths to take a stand against stigma in their congregations and raise awareness on HIV and AIDS. Donate to Reaching All HIV+ Muslims in America.

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. 

ADAP Leadership Award Honorees Help Navigate "Unchartered Water"

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

Yesterday, honorees of the 2016-2017 ADAP Leadership Awards were announced by the ADAP Advocacy Association (aaa+^®). The awards recognize individual, community, government and corporate leaders who are working to improve access to care and treatment for people living with HIV/AIDS — including the AIDS Drug Assistance Program (ADAP). This year's honorees reflect the organization’s conference theme, "Unchartered Water: AIDS Drug Assistance Programs in the Age of Trump."

The timing yesterday of the awards announcement was only fitting, as three Republican Senators joined all 48 Senate Democrats to kill the so-called "skinny bill" designed to repeal the Affordable Care Act (aka, Obamacare). So far this year, ADAP stakeholders — and many others — have been consumed by the uncertainty over the future of the ACA and the protections afforded to people living with HIV/AIDS. Whereas the "Age of Trump" is still unfolding, ACA repeal threatened the care for thousands of people living with HIV/AIDS either through ADAP premium assistance, Medicaid expansion, or ACA marketplace subsidies. That uncertainty has abated, at least for the short term.

Within the HIV/AIDS advocacy community, we are fortunate to be surrounded by so many inspirational leaders. They, too, serve as a reminder about the daily challenges faced by people living with HIV/AIDS, and yet how it is possible to overcome them. That is why it is important to reflect on the accomplishments achieved by individual, community, government and corporate leaders working to improve access to care and treatment for HIV/AIDS.

The awards will be presented to this year's honorees during the 7th Annual ADAP Leadership Awards Dinner, which is being held in Washington, DC on Saturday, September 23rd. The following leaders will be honored:

• Lifetime Achievement (individual): Paul Arons, MD & Paulette Heath
• Champion of the Year (individual): Britten Pund, Director, Health Care Access, National Alliance of State & Territorial AIDS Directors (NASTAD)
• Emerging Leader of the Year (individual): Khadijah Abdullah, Founder, RAHMA and Muslim Nannies
• Corporate Partner of the Year: ViiV Healthcare
• Community Organization of the Year: The Resource Group, Inc., Houston, TX
• Lawmaker of the Year: The Honorable Marilyn Avila, General Assemblywoman (N.C.) & The Honorable Scott Wiener, State Senator (Calif.)
• Social Media Campaign of the Year: Pozitively Dee Discussions, by Davina Conner
• Grassroots Campaign of the Year: Network Empowerment Project (NEP) by SERO Project
• Media Story of the Year: “America’s Hidden H.I.V. Epidemic” by Linda Villarosa, published in the New York Times on 06/06/17

Lifetime Achievement Award

Only the third time this award is being presented, it is being bestowed on two individuals who dedicated much their professional careers fighting the disease. Both are now retired.

Dr. Paul Arons has been advocating for people living with HIV/AIDS for several decades, never wavering in his commitment to promoting access to affordable care and treatment. He served as the medical director for the Florida Department of Health AIDS Program, where that state ADAP resides.  Paul remains involved in national advocacy, working with numerous national organizations. He continues to provide consulting to the Florida ADAP, and other regional and national organizations interested in ensuring optimal access to care and treatment for people living with HIV and Viral Hepatitis. Even in his retirement, Paul routinely reaches out to key stakeholders in the community to keep stakeholders updated on potential threats to safety net programs, such as Ryan White, ADAP, and Medicaid.

Paulette Heath was been a leader in the pharmaceutical industry at forging relationships with patient groups. During her tenure at Janssen Therapeutics, she continually sought input from community stakeholders, including hosting meetings in Washington, DC. Paulette ensured that Janssen Therapeutics was an informed industry partner, whether it through funding projects and events, sharing information about ADAPs, or promoting cross collaboration with other stakeholders. There was rarely an ADAP-related event whereby Paulette was not present, thus further demonstrating her commitment to improving access to care and treatment.

Champion Award

The ADAP Champion is the organization's oldest award, pre-dating the Annual ADAP Leadership Awards — which started in 2010. This year's award represents an important milestone, because it is the 10th time it is awarded.

Britten Pund has for many years been instrumental in advocating for people living with HIV/AIDS, and providing data to support the efforts of countless community organizations. Unrelenting in her mission, Britten works daily to ensure patients have access to ADAP resources, and professionally manages communications between pharmaceutical companies, AIDS Service Organizations, state agencies, healthcare providers, and others always keeping people living with HIV/AIDS as the top priority. For many years, Britten has helped to produce the ADAP monitor report annually for NASTAD. This data has broad value and reach contributing to ADAP decisions at the federal level, and state general assemblies across the country. She has presented at the Annual ADAP Conference for each of the last six years, and is expected to participate again this year.

Emerging Leader Award

Khadijah Abdullah started RAHMA, which addresses HIV/AIDS primarily in the American Muslim community. At the same time, RAHMA does not turn anyone away regardless of religious beliefs. According to RAHMA's website, "Rahma is the Arabic word for mercy. It is important to have mercy and compassion when supporting those living with HIV and spearheading educational efforts." In a very short period of time, Khadijah has positioned herself as a leading voice for an important marginalized community and achieving some pretty significant milestones. She has raised awareness about the important role Faith plays in the holistic continuum of care for many people living with HIV/AIDS.

Corporate Partner Award

ViiV Healthcare has launched numerous targeted projects, including community-led responses in resource limited settings and hostile environments for MSM and transgender people; its ACCELERATE! Initiative — which amplifies the voices of black gay men living with or affected by HIV; and its initiative on Closing the Gap in the Latinx Community. Additionally, ViiV's Positive Action Southern Initiative supports all populations living with HIV/AIDS in the South, it prioritizes support for the most impacted populations — including LGBTQ communities, youth, elderly, rural populations, formerly incarcerated, sex workers, and injection drug users.

Community Organization Award

The mission of The Resource Group, Inc. is to maximize all possible medical, psychosocial and educational resources to help persons affected by or at risk of HIV/AIDS with a primary focus in Northeast, Deep East and Southeast Texas. In September 2016, the Texas Department of State Health Services awarded funding to The Resource Group. Inc. to help improve the ADAP applications process by implementing ADAP workers at Ryan White agencies throughout Texas. As the only non-profit Ryan White Part B grant administration agency in Texas, we developed a system to implement, train and monitor the ADAP workers in a 51 county region, which includes rural East Texas and Houston.

Lawmaker Award

Former Representative Marilyn Avila served in the North Carolina House of Representatives from 2007 - 2016 representing Wake County, and served as a chair of the Health and Human Services Appropriations Committee. As a chair, she paid special attention to the budget for the NC AIDS Drug Assistance Program, and was committed to maintaining full funding for the program to guarantee all eligible individuals could receive medication. In 2016, she championed an effort supported by NC AIDS Action Network to expand access to care for ADAP to secure premium assistance for patients. Rep. Avila has also supported efforts to move North Carolina toward legalizing syringe exchange programs. In 2015, she was a lead sponsor on a bill to pilot used needle deposit sites, which was approved and paved the way for full needle exchange approval in 2016.

State Senator Scott Wiener was a vocal critic of the California Department of Health’s debacle over the state AIDS Drug Assistance Program contract, which resulted in interrupted treatment for clients, as well as possible data breach of client information. He commented, “I understand that the ADAP system is currently offline for an indefinite amount of time due to potential security breaches. Not only am I extremely concerned that personal information of ADAP clients may have been compromised, but also that the entire ADAP system is down during the height of open enrollment. Frankly, I am astounded that these system issues have yet to be resolved and continue to arise six months into the transition.” Senator Wiener was relentless in asking the tough questions that eventually led to the California DOH reversing course when it was evident that people living with HIV/AIDS were falling through the cracks.

Social Media Campaign Award

Pozitively Dee Discussions is a podcast hosted by Davina "Dee" Conner. Positively Dee Discussions promoted the Red Bow Tie campaign, in support of Heterosexual Men's HIV Awareness day on August 16th. It is aimed at supporting straight men with HIV, their needs, and the necessity create circles where straight men can connect and feel comfortable sharing their status. Creating that support helps straight men break through stigma and seek care that will protect their sexual health and their partner's sexual health. The podcast also collaborated with Rev. William Francis of the William Francis Ministries and Campaign Zero in Atlanta to promote the Red Bow Tie campaign on Heterosexual Men's HIV Awareness Day.

Grassroots Campaign Award

The Network Empowerment Project (NEP) was created by the Sero Project to facilitate the creation and strengthening of networks of people living with HIV (PLHIV) networks, whether the networks are focused on advocacy, education, recreation, provision of services or for mutual social support. NEP's goal is to support all such networks and make sure that those living with HIV who are newly-diagnosed are provided the opportunity to connect with the network(s) that can be most helpful to them in navigating the stigma, isolation, fear, loneliness, complicated treatment decision making and healthcare access issues and more.

Media Story Award

Authored by Linda Villarosa, "America’s Hidden H.I.V. Epidemic" highlighted why America’s black gay and bisexual men have a higher H.I.V. rate than any country in the world. It was published in the New York Times on June 6, 2017. The article was widely hailed as long-overdue, sounding the alarm over the disproportionate impact HIV/AIDS is having on this marginalized community.

Information about the awards is listed online at www.adapadvocacyassociation.org/awards.html.

Tickets to attend the awards dinner can be purchased online.