Reflections from an HIV Advocate's Journey: Chunnika L. Hodges

By: Chunnika L. Hodges, Michigan State Lead, Positive Women's Network-USA (PWN)

As I reflect on my journey as an advocate living with HIV, I would say that it has its ups and downs. At some point, I stepped back from the scene for a while. As much knowledge of HIV & experience with PLWH (familial) as I had at the time, I was still unaware of the risk (I was in a monogamous relationship. I say that because messaging surrounding women and HIV, let alone Black women and HIV, was not discussed or seen in 2005! Receiving a dual diagnosis of pregnancy and HIV at the age of 25, I was unprepared for the next steps, asking myself, was I going to terminate my pregnancy or go through this pregnancy? Mainly because of the way the medical professional delivered the news of me now having HIV and being pregnant. Upon entering the room, the doctor was like (after looking at the file), "Ms. Hodges, you're HIV positive and pregnant," and walked out of the door 90 seconds after delivering life-altering news. 

That day in September 2005, six-eight weeks before my 25th birthday, changed my life like I never thought it would. Shortly after giving birth to my daughter, who is now 16 years old and HIV negative (because of the HAART regimen available to prevent transmission during & after the birthing process), I started out doing speaking engagements; from there, it led to me connecting to a group of women just like me "Pregnant and living with HIV." Being a part of this group opened so many doors for me, mainly because I was the only young black woman living openly about her HIV status. I was not blasting from the stands; however, when teachable moments came up, I took advantage of the moment to educate and create awareness of the complexities of acquiring HIV. For instance, even though you may think that you are in a monogamous relationship, your partner may not be in that same relationship. My favorite statement to women when I talk is, "Get Tested…. You do not carry your partner's penis in your purse like it's the American Express Card; You do leave home without it," Meaning have those hard conversations, get tested together (if the opportunity arises), but be more proactive about your Sexual health care needs. Growing up with self-esteem issues, daddy issues, body image, etc., I was a hot mess internally and, therefore, externally, led to relationships that were what we now call unhealthy relationships. From that moment, moving forward, I became involved in any way I could, but not realizing the cost to myself because of the lack of knowing who I was as a Black woman. For a while, I was going through the motions of feelings of unworthy, nasty, low self-esteem, mentally & emotionally not good! I realized I had become a token in this advocacy journey. 

AIDS Walk, 2017

I say that because, before my diagnosis, I was not the confident woman people see today! As I write this blog to reflect, I have realized that my diagnosis has been a curse and a blessing at the same time. If that make sense? Diagnosis of HIV has given me the confidence &purpose to live out loud and unapologetically; also, because I am a unique case of a WLWH, the blessing is that I have not been on medication; only until eight weeks after giving birth to my daughter. The "curse" of this diagnosis is finding meaningful relationships (with self and others). As I reflect, I remember being in spaces where I would share my status and what that means and looks like for me. Some were intrigued by my uniqueness of living with HIV. While some displayed other types of expressions and comments,  like "she ain't got it." Words like this came from my "peers." Hurt like hell, but I never let those people see sweat. However, I internalized those feelings and started feeling like I did not belong in the journey of advocating for PLWH; why you may ask? It was for a few reasons: my story was not like the others I encountered when sharing their story. Not taking medicine, me being open about my status since being diagnosed. Earlier I mentioned that losing myself in this journey came as a cost to me. My identity was wraparound "a black woman living with HIV." But not knowing who I was before my diagnosis was the key to finding myself again. So I took a break from the journey to find out who I was and my purpose on this journey. After taking a hiatus, I came back knowing my purpose of educating about research on HIV and the importance of becoming involved and providing my experience as a black woman engaged in research studies. Some would say, why research? Earlier I spoke about my diagnosis being a curse and a blessing simultaneously. 

Although HIV is living with me, it has not defeated me by far. For the last 15 years, I have not had to take medicine to control or suppress my HIV, and as of 2012, in the National Institute of Health Long-Term Non-Progressor (LTNP) study and 2018, I was noted as an Elite Controller of HIV. Understanding the science behind my case of HIV drove me to become involved in research. The other blessing from this diagnosis has provided me with a privilege. The privilege is that I do not take medicine; having condomless sex before U=U became a hot topic after the Swiss Medical Journal article, and I am mentally strong upon my diagnosis, which remains today. 

Along with sharing my experience as a black woman living with HIV, I am so blessed not to have to experience some of the things other women living with HIV do, such as having the support of family, friends, mentors, etc. Pouring into me genuinely and finally becoming employed in the field has changed my life. Meeting people I never imagined meeting, going places I never thought I would go, etc. I was doing things and involved in projects, advisory councils, and the board of directors for a national network group of women living with HIV. I would not change a thing!  

But the takeaway from this reflection is that there will be times when there will be when you feel like giving up; in those times, remind yourself that it is okay to take a step back to redefine your purpose in this journey. Newly diagnosed with HIV, there is life after the diagnosis; the choice is yours on whether you want to thrive and live or exist. Find Your Tribe and Thrive to your fullest potential.

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.

Reflections from an HIV Advocate's Journey: Kalvin Pugh

By: Kalvin Pugh, Senior Manager for Community Engagement, International Association of Providers of AIDS Care (IAPAC)

I’ve always felt like a rebel. Growing up as a gay kid in a religious home in Kansas will do that to you. My journey into advocacy began like any other advocate – it became personal. On May 22nd, 2016, I was given the results of my routine HIV test. This time, the results were different. I swore at the time that no one who didn’t need to know would.

That opinion changed a few months later after my friends and I were out when someone approached them and told them they shouldn’t be drinking after me. Rumors spread fast in smaller communities but instead of getting upset, I got curious. I became curious about how ideas like that survived the 80s and 90s and the rebellious kid in me wasn’t about to let others define who I was.

So, I turned to social media. I wrote (and rewrote) what I wanted to say, including, “I want to live a life unashamed of my truths, no matter what they are,” before I finally clicked post.

There were certainly a few friends who didn’t want to be associated with HIV. But then came a formative, discreet moment when I was approached by someone who told me that what I had shared had meant a lot and then whispered, “Me too.” That was the first time I understood that if you can say aloud the things others are afraid to whisper, you become a voice instead of a victim. 

After seeing a life changing video online of the incredible Bruce Richman, social media became my soap box where I shared my life and the revolutionary message of Undetectable Equals Untransmittable with anyone who would listen. 

Shortly after, I took a job as a peer educator, where I would worked for four years directly with clients including both newly diagnosed individuals and those for whom staying in care wasn’t easy. Throughout my time there, I learned from the best team of colleagues and a wonderful mentor in my supervisor LaTrischa.

In 2018, I was approached to become a patient ambassador for a pharmaceutical company. I was whisked off to training with nine incredible advocates, many who have become lifelong friends. That experience led to years of speaking engagements, magazine ads, and one TV commercial, which was the first time U=U had been featured in a nationwide campaign in the United States. 

A year ago, I was given the incredible opportunity to serve as senior program manager of community engagement for the International Association of Providers of AIDS Care. To be part of an incredible global team working to end the HIV pandemic has led me to grow, to learn more about myself, but most importantly to put people in the center of everything I do. 

I could talk about awards that sit on my bookshelf collecting dust, but that’s not what I value. It's the moments no one else has seen – the conversations behind closed doors with clients in the clinic, the messages on social media with people from all over the world – that have impacted me the most. Seeing people go from diagnosis and being scared that their life was over to the moments when they realize that their life has just begun – those moments are the greatest reward. 

My journey from my diagnosis to now has been one of incredible privilege, access, and opportunities. It hasn’t been a cakewalk, but I have tried my best, in my own way, to use my privilege and the opportunities that have come to advocate for others.

So here I am six years later with so many lessons learned. I don’t know a lot, but I know that people living with HIV are my people. I don’t want to bring seats to tables that weren’t built for us, but rather build bigger and better tables. I want everything I do to honor those giants whose shoulders I stand on, and to make way for those who will certainly come after. 

I imagine I will always feel like that rebellious kid, but at least now, I’m a rebel with a cause.

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.

Spike in Monkeypox Disease Among MSM Causes Alarm, Too

By: Ranier Simons, ADAP Blog Guest Contributor

On Saturday, July 23, 2022, the World Health Organization (WHO) declared monkeypox a PHEIC, public health emergency of international concern.[1] Internationally, the number of cases has reached over 16,000 in over 75 European countries, North and South America, the Middle East, South Asia, Australia, and other parts of Africa not previously exposed.[1] In the United States, there have been roughly 2,900 cases. 

It is important to note that anyone can contract monkeypox. Monkeypox was first identified in 1958 in a colony of research monkeys.[2] Since 1970 human outbreaks have been reported in 11 African countries. The first outbreak outside of Africa was in 2003 in the United States. It occurred in several midwestern states and was linked to infected prairie dogs that people had as pets. Those pets likely contracted the disease from being housed with infected rats and door mice shipped from Ghana.

Photo Source: National Institute for Communicable Diseases

Although anyone can contract the disease, the recent outbreak disproportionately affects gay, bisexual, and men who have sex with men (MSM).[2] The U.S. Centers for Disease Control & Prevention (CDC), the media, and health professionals have consciously not labeled monkeypox a gay disease. It indeed is not a gay disease. However, given that the current outbreak mainly affects gay men, it is essential to clarify that explicitly. The award-winning blogger Mark S. King points out, "Gay men are getting monkeypox and suffering greatly. When gay men understand the threat, we are more likely to take precautions, get vaccinated, or be informed about treatment”.[3]

Concerns about stigma are valid. Gay men historically have and continue to face stigma and apathy in the healthcare arena and public opinion regarding healthcare issues. But, King also points out that it is dangerous to bury facts with vague and evasive messaging.[3] Vague messaging leads the general public to think that their present odds of contracting the disease are higher than the reality of the numbers. Conversely, labeling monkeypox a gay illness would make the public complacent about being mindful of their activities and being tested when they should be. 

The Washington Post’s Benjamin Ryan points out that “…public health experts know well, epidemiology is less concerned with whether someone could contract an infection; instead, the much more vital questions focus on which groups of people are most likely to be exposed to a pathogen, to contract it and why.”[4] There need to be targeted education and prevention efforts aimed at gay men to emphasize the specifics that make them more susceptible to the spread of monkeypox. Facts show that the sexual and social networks of gay men are why it is hitting the population hard. There have been clusters of infections traced back to events such as large circuit parties, nightclub events, and pool parties. Bathhouses are the settings of some clustered outbreaks, as well. Gay men need to be informed of the statistical fact of gay men having an increased incidence of multiple sex partners, especially in combination with certain events and travel, which also increases the likelihood of the spread of monkeypox amidst their demographic.

Monkeypox is contracted through close skin-to-skin contact. Transmission comes from exposure to broken skin, mucus membranes, respiratory droplets, infected bodily fluids, and even contact with contaminated linens. It is not airborne like Covid-19. Rubbing, kissing, and physical contact are enough to cause infection. Sexual intercourse is not necessary. Seven to fourteen days after infection is when symptoms usually appear. Fever, chills, exhaustion, headaches, and muscle weakness are typically initial signs.[2] Progression includes the swelling of lymph nodes and widespread body rash that can include the mouth, hands, and feet. Then fluid-filled painful pox can appear on the body, surrounded by red circles. There is increased reporting that some infected individuals only see some rash and painful pox sores in the genital and anal regions instead of all over the body.

Photo Source: PBS

Over 190,000 doses of the two-dose Jynneos vaccine have been pulled from the Strategic National Stockpile. Jynneos is used for the prevention of monkeypox and smallpox. There is still not enough in circulation to meet the demand for vaccination nor to vaccinate all those in the highest risk categories. There is also an antiretroviral effective against monkeypox named TPOXX (tecovirimat), approved by the U.S. Food & Drug Administration (FDA) for use against smallpox in 2018.[5] Unfortunately, TPOXX was only authorized for smallpox because it is deadly and can be considered a possible bioterrorism weapon. Monkeypox is not fatal like smallpox. Thus obtaining TPOXX requires many pages of paperwork to get it from the Strategic National Stockpile. Additionally, protocol requires doctors to submit pictures of a patient's lesions to the local health department or CDC and a folio of pages of detailed information to get TPOXX. After getting the drug, patients are required to keep a daily journal while they are taking it.[5]

Presently, monkeypox prevention is paramount as vaccination and treatment options are scarce. Effectively educating gay, bisexual, and men who have sex with men with the unadulterated details of their demographics’ statistically documented behaviors put them at high risk is the best weapon against the spread of the disease. Targeted explicit information delivered with respect and dignity is the best way to avoid stigma while undergirding the importance of the information.

[1] Branswell, H. (2022, July 23). WHO declares monkeypox outbreak a public health emergency. Retrieved from https://www.statnews.com/2022/07/23/who-declares-monkeypox-outbreak-a-public-health-emergency/
[2] Howard, J. (2022, July 21). Monkeypox spreading in 'cluster events,' but vaccines can help stop it, local health officials say. Retrieved from https://www.cnn.com/2022/07/21/health/monkeypox-clusters-local-officials/index.html
[3] King, M. (2022, July 19). Monkeypox is a gay thing. We must say it. Retrieved from https://marksking.com/my-fabulous-disease/monkeypox-is-a-gay-thing-we-must-say-it/
[4] Ryan, B. (2022, July 18). You are being misled about monkeypox. Retrieved from https://www.washingtonpost.com/opinions/2022/07/18/monkeypox-gay-men-deserve-unvarnished-truth/
[5] Walsh, D. (2022, July 21). There Is a monkeypox antiviral. But try getting it. Retrieved from https://nymag.com/intelligencer/2022/07/tpoxx-is-a-monkeypox-antiviral-but-try-getting-it.html

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.   

Resurgence of Meningococcal Disease Among MSM Causes Alarm

By: Ranier Simons, ADAP Blog Guest Contributor

Amidst the myriad of present-day public health concerns, including Covid-19 and monkeypox, there is another to add to the list. The U.S. Centers for Disease Control & Prevention (CDC) has raised the alarm regarding a surge in meningococcal disease. There has been an unusual surge of meningococcal disease in Florida.[1] The outbreak has been deadly, with 26 reported cases and 7 deaths. The CDC describes this outbreak as one of the worst meningococcal disease outbreaks among gay and bisexual men in U.S. history.[2] Twenty-four of the 26 documented cases and 6 of the 7 deaths thus far have been MSM (men who have sex with men). Anyone can become infected with meningococcal disease. It just happens that this present outbreak has initially affected mainly MSM. Presently, the outbreak primarily affects people living in Florida but has affected people who have traveled to Florida.

There are two types of meningococcal disease: meningitis and bloodstream sepsis. The Neisseria meningitidis bacteria cause them.[3] Meningitis is an infection of the tissues surrounding the brain and spinal cord. Bloodstream sepsis is a bloodstream infection resulting from the body attempting to fight infection. The body releases chemicals into the bloodstream to fight the meningococcal bacteria. As a result, those chemicals cause inflammation throughout the body. That inflammation can negatively affect the body in many ways, including organ failure and death.[4]

Photo Source: CDC

The disease is respiratory with bacteria found in the back of the throat or nose. Spread generally requires close contact and can also be caused by coughing or kissing. This is why the CDC is very alarmed, given the many summer music events, Pride festivals, and other gatherings where people are in crowded areas for extended periods. Signs of meningitis are sudden high fever, neck stiffness, headache, nausea, sensitivity to light, and mental confusion.[5] Symptoms of meningococcal sepsis are fever, chills, unusual fatigue, and in some cases, a purplish rash on the hands and feet.[5]

Without treatment, both meningococcal diseases can kill within days.[3] There are multiple species or subgroups of meningococcal bacteria. Subgroups B and C have been detected in the Florida outbreaks. Strain C is affecting large numbers of gay, bisexual, and other MSM in the counties of Orange, Polk, Seminole, Miami-Dade, and Broward. A much smaller outbreak has been detected in Leon County of Florida, affecting primarily college students, caused by strain B.

Fortunately, vaccines against meningococcal disease have been around for a long time and are widely available. The most common one is the MenACWY vaccination which protects against subgroups  A, C, W, and Y. The MenB vaccine is for subgroup B. The CDC urges all those living with HIV to get vaccinated in addition to MSM. Even before this outbreak, doctors recommended vaccination for people living with HIV. In the U.S., healthcare providers have recommended the 2-does series of the MenACWY vaccine since 2016.[6] However, widespread adoption of vaccine adherence has historically not been accomplished. The effort to educate on the importance of vaccination needs to increase as there isn’t high vaccination uptake among those newly diagnosed with HIV. 

Photo Source: TNS; The Atlanta-Journal Constitution

Since anyone can become infected, everyone must be mindful of the danger of meningococcal disease. Those in high-risk groups, including college students and MSM, should vaccinate and maintain vaccination over time. People can survive if providers administer antibiotics early. However, there can be long-term issues after contracting the bacteria, such as hearing or vision loss, amputation of affected limbs, and even memory and concentration issues.

Diseases spread quickly. Thus, it is important for people all over the country to take meningococcal vaccination seriously, not just people living in Florida. People travel to and from Florida regularly, especially as travel contiuously  increases in the direction of pre-Covid pandemic numbers.

[1] Thomas, D. (2022, June 30). Georgia health officials report no cases here, but issue cautions for men who have sex with men and travel to Florida. Retrieved from https://www.ajc.com/news/coronavirus/unusual-surge-of-meningococcal-disease-cases-in-florida-alarms-the-cdc/KHCYT7D46VFLLJIWVYS67WIPJA/
[2] Freeman, L. (2022, June 30). Meningococcal outbreak in Florida; Lee County has second highest case count with four cases. Retrieved from https://news.yahoo.com/meningococcal-outbreak-florida-lee-county-151840797.html?soc_src=social-sh&soc_trk=tw&tsrc=twtr&guccounter=1/
[3] Thomson, J. (2022, June 24). Florida Meningococcal Disease Outbreak: CDC Urges Gay Men To Get Vaccine. Retrieved from https://www.newsweek.com/gay-men-florida-outbreak-meningococcal-disease-meningitis-sepsis-vaccine-1718797
[4] CDC. (2021, August). What is sepsis? Retrieved from https://cdc.gov/sepsis/what-is-sepsis.html
[5] Padgett, D. (2022, July 7). CDC Encourages Meningococcal Vaccine For At-Risk Florida Visitors. Retrieved from https://news.yahoo.com/cdc-encourages-meningococcal-vaccine-risk-193000372.html?soc_src=social-sh&soc_trk=tw&tsrc=twtr
[6] Shaw, M. (2022, June 23). Meningococcal vaccine uptake lagging among people living with HIV. Retrieved from https://www.ajmc.com/view/meningococcal-vaccine-uptake-lagging-among-people-living-with-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.   

HRSA Releases Annual ADAP Client-Level Report - Program Enrollment Way Up

By: Marcus J. Hopkins, Founder & Executive Director, Appalachian Learning Initiative

The Health Resources and Services Administration (HRSA) has released the AIDS Drug Assistance Program (ADAP) Annual Client-Level Data Report, 2019. These data reflect the demographic characteristics of clients served by the ADAP program from 2015-2019. This is the first such data report since September 2020 (HRSA, 2022) as a result of the onset of the COVID-19 global pandemic.

Increasing ADAP Enrollment

In 2019, 296,930 clients were served by state ADAP programs across the United States—an increase of more than 37,000 clients from 2015. While this represents a 14.4% increase in national enrollment numbers from 2015 to 2019, 24 states saw enrollment increases or decreases of greater than 25% (Figure 1).

Two states—Arkansas and Nevada—saw increases of greater than 100%, with Arkansas seeing a 122.8% increase and Nevada seeing a 168.8% increase. Comparatively, three states—Alaska, Louisiana, and Minnesota—saw decreases in enrollment of greater than 30%. Nineteen states saw enrollment increases between 25% - 99.9%.

Client enrollment regularly decreases and increases based on a number of factors, including but not limited to:

• Clients becoming newly eligible or ineligible based upon their income
• Clients moving from state ADAP programs to state Medicaid programs
• An increase in new HIV diagnoses and, with the delivery of competent case management services, being enrolled in the program
• Clients moving into or out of states
• Clients passing away

Because no one state’s ADAP program is identical to another, the reasons for enrollment increases and decreases are highly specific to each state. That said, significant increases and decreases should be carefully examined to identify service disparities, particularly in states where patients face numerous barriers to accessing care and treatment.

Figure 1. Change in State AIDS Drug Assistance Programs (ADAPs) Enrollment, 2015 to 2019

Photo Source: HRSA, 2022

The Demographics of ADAP

77.7% of ADAP clients are male—a figure that has remained unchanged since 2015. Similarly, the racial and ethnic demographics of ADAP clients have remained largely unchanged since 2015, with an average of roughly 40% of enrollees being Black Americans, 26% being Hispanic/Latino, and 30% being White from 2015 to 2019. Of the women who are clients of ADAP, over half (57.0%) are Black. Additionally, ADAP enrollees have continued to overwhelmingly be at the lowest end of the income eligibility scale with 43.5% of clients earning between 0% - 100% of the Federal Poverty Level (FPL)—$12,490/year for an individual.

These demographics have all remained largely unchanged over the past decade in no small part because they are reflective of the HIV epidemic, in and of itself. New HIV diagnoses continue to be disproportionately identified in Black, Brown, and lower-income communities. As a result, those clients compose the majority of ADAP clients.

In addition to gender, race, and income demographics, ADAP clients who are part of a racial or ethnic minority tend to be younger than their White counterparts. 58.6% of White ADAP clients are aged 50 or older.

Health Coverage of ADAP Clients

In 2019, nearly 40% of all ADAP clients had no healthcare coverage, whatsoever, including private and employer-sponsored insurance, Medicaid coverage, Medicare coverage, Veterans Administration coverage, Indian Health Services coverage, and other types of coverage. This varies by race, with just 22.0% of White clients lacking healthcare coverage compared with 49.3% of Hispanic clients and 43.8% of Black clients. It also varies by gender, with 38.5% of male clients lacking coverage and 37.3% for females. Trans folx and gender non-conforming individuals were disproportionately impacted by a lack of healthcare coverage, with 48.3% of transgender male clients, 50.2% of transgender female clients, and 60.4% of clients with different gender identities lacking coverage.

Services Utilization of ADAP Clients

The percentage of clients who received only full-pay medication assistance (where ADAP pays the full cost of medications) decreased from 52.6% in 2015 to 46.8% in 2019. This number is expected to decrease as more ADAP programs begin transitioning clients over to other payor models, such as insurance continuation programs, medication co-pay/deductible assistance, or insurance premium assistance. Each of these models represents cost savings for ADAP programs over the full-pay medication assistance service, as the ADAP programs are no longer paying the full cost of medications.

Breaking these services down by Health and Human Services (HHS) Region (Figure 2), Region 4, which comprises most of the American South, saw the highest percentage of ADAP clients receiving full-pay medication assistance (38.6%).

Figure 2. Map of United States Department of Health and Human Services Regions

Photo Source: HRSA, 2022

 Potential Concerns for ADAPs

There are some concerns being circulated that ADAP enrollment may begin increasing in the near future. The onset of the COVID-19 global pandemic resulted in the Secretary of HHS declaring quarterly national Public Health Emergencies (PHEs) beginning in January 2020 (Office of the Assistant Secretary for Preparedness and Response, 2022). One of the provisions of the PHE declarations required states to keep people enrolled in state Medicaid programs throughout the PHE in order to receive the temporary increase in the federal share of Medicaid costs. 

When the Secretary fails to renew the PHE, this provision, along with the increased federal funding, will end, meaning that state Medicaid programs will likely begin redetermining eligibility. This could result in an influx of clients moving off of Medicaid and back onto state ADAP programs, which are statutorily required to be the “payor of last resort.”

Additional concerns exist around the reauthorization of the Ryan White HIV/AIDS Program (RWHAP), which has not been reauthorized since 2009. Because the law has no sunset provision, meaning that it can be funded in perpetuity. There have been consistent concerns about reopening RWHAP for reauthorization for fear that Republicans in Congress will gut the program. These concerns have been voiced since at least 2013. As a result, there is little advocacy in favor of reauthorization.

Ultimately, the ADAP program is currently as “safe” as it’s ever been. Waitlists are virtually a thing of the past, meaning that eligible patients are able to gain access to the medications that they need. The ADAP Advocacy Association will continue to monitor the program for both successes and challenges.

References:

• Health Resources and Services Administration. (2020, September). Ryan White HIV/AIDS Program AIDS Drug Assistance Program (ADAP) Annual Client-Level Data Report 2019. Rockville, MD: United States Department of Health and Human Services: Health Resources and Services Administration: HIV/AIDS Bureau: Division of Policy and Data https://ryanwhite.hrsa.gov/sites/default/files/ryanwhite/data/hrsa-adr-data-report-2018.pdf
• Health Resources and Services Administration. (2022, June). Ryan White HIV/AIDS Program AIDS Drug Assistance Program (ADAP) Annual Client-Level Data Report 2019. Rockville, MD: United States Department of Health and Human Services: Health Resources and Services Administration: HIV/AIDS Bureau: Division of Policy and Data https://ryanwhite.hrsa.gov/sites/default/files/ryanwhite/data/hrsa-adr-data-report-2019.pdf
• Office of the Assistant Secretary for Preparedness and Response. (2022, April 12). Renewal of Determination That A Public Health Emergency Exists. Washington, DC: United States Department of Health and Human Services: Office of the Assistant Secretary for Preparedness and Response: Public Health Emergency Declarations. https://aspr.hhs.gov/legal/PHE/Pages/COVID19-12Apr2022.aspx 

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. 

Copay assistance is a lifeline for patients. So why are insurers blocking it?

By: Stephen J. Ubl, President & Chief Executive Officer with the Pharmaceutical Research and Manufacturers of America (PhRMA)

****Reprinted with permission from the Pharmaceutical Research and Manufacturers of America****

In today’s broken insurance system, patients too often pay more for a medicine than what their insurance company pays.

While the prices insurers pay for brand medicines increased just 1.0% last year, too many patients still face unaffordable costs for life-saving treatments. In fact, commercially insured patients with a deductible have seen their out-of-pocket costs for brand medicines increase 50% since 2014.

This erosion in insurance coverage may be discouraging patients from using the medicines prescribed by their doctors, and the consequences can be devastating. In 2021, 61% of commercially insured patients did not fill their new prescription when their out-of-pocket costs exceeded $250.

Photo Source: PhRMA

That is why PhRMA supports a holistic solution to lower drug costs for patients. Until we address the roles insurers and pharmacy benefit managers play in deciding how much people pay at the pharmacy, there will still be individuals who struggle to afford their medicines.

In the absence of these broader reforms, many drug manufacturers offer help through patient assistance programs. When insurance falls short, this assistance aims to help patients take their medicines as prescribed by their doctors.

Research has found that those who use patient assistance were up to 47% more likely to stick with their treatment for a year. This lifeline is especially critical for individuals with chronic conditions. In 2019, they helped patients taking brand HIV or oncology medicines save $1,600 on average. Patients taking multiple sclerosis medicines saved an average of $2,200.

How Insurers Are Actively Undermining Patient Assistance

Unfortunately, insurers are adopting tactics that can deny patients the benefit of this assistance. Not only are insurers reducing coverage, they are coming between patients who need help and the assistance available to them. For example, insurers use accumulator adjustment programs, which exclude patient assistance from counting toward a patient’s deductible and out-of-pocket maximum. This forces patient to pay more and more out of pocket before their insurance coverage begins.

The intent of insurers is clear. These programs attempt to steer patients towards medicines insurers prefer instead of those that doctors prescribe. Not surprisingly, steering patients away from their prescribed medicines can steer them toward worse health outcomes.

In a survey, more than half of insurance companies acknowledged that accumulator adjustment programs can negatively impact whether a patient uses their medication as prescribed. Evidence shows that patients impacted by accumulator adjustment programs are 13 times more likely to stop taking a treatment as compared to those with consistent copays.

In some ways, patient assistance is similar to the support hospitals provide when they waive a patient’s out-of-pocket expenses. Taxpayer-funded incentives encourage this kind of hospital assistance. Yet the patient assistance many rely on for life-saving medicines is under assault by insurers.

Pushing Forward Patient-Centered Solutions

In a win for patients, a federal district court judge recently struck down a rule that would have made it more difficult for manufacturers to offer patient assistance. The federal judge noted that patient assistance can help people “shoulder high out-of-pocket costs and obtain needed medications that their doctors have prescribed.” The judge also described accumulator adjustment programs as “schemes” devised by health insurers to “pocket for themselves at least some of the assistance” that’s meant for patients.

Fortunately for patients, lawmakers are also taking notice. Since 2019, 15 states have banned accumulator adjustment tactics in state-regulated markets. At the federal level, a bipartisan bill was introduced to ban accumulator adjustment programs in many commercial health plans. Congress should build on the recent federal judge’s decision and rein in the use of accumulator programs.

Patient assistance offers a lifeline, but if insurance worked like insurance – covering the sick when they need care – patients wouldn’t have to rely on this assistance to afford the out-of-pocket costs for their medicines.

We need to solve systemic flaws that are driving up costs for patients in the first place. For example, insurers and PBMs pocket billions of dollars in rebates and discounts that are provided by drug manufacturers. These savings should be shared with patients at the pharmacy, but instead, many patients are forced to pay more for medicines than their insurance company pays.

Whether it’s through high out-of-pocket costs or accumulator adjustment policies, insurers are getting in between patients and their medicines. We should be doing everything we can to remove these barriers so people can access the health care they need. And until then, let’s remove barriers to patient assistance to help make medicines more affordable for those in need.

Stephen J. Ubl Stephen J. Ubl is president and chief executive officer of PhRMA. Mr. Ubl leads PhRMA’s work preserving and strengthening a health care and economic environment that encourages medical innovation, new drug discovery and access to life-saving medicines. Ubl is recognized around the world as a leading health care advocate and policy expert who collaborates successfully with diverse stakeholder groups – including patient and physician groups, regulators, public and private payers, and global trade organizations – to help ensure timely patient access to innovative treatments and cures.

This opinion piece was also published in the June 29th edition of the Catalyst.

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.  

Is a One-Shot HIV Therapy on the Horizon?

By: Ranier Simons, ADAP Blog Guest Contributor

The advent of new medicines has been fighting the scourge of the HIV/AIDS epidemic since the world became aware of it in 1981. Since, science has made many advances. Research birthed tests to detect the virus in the blood. Antiviral medications have evolved from AZT, and its serious adverse side effects, to the multi-drug daily one-pill regimens on the market today...and now injectable therapies. Despite all of the advances, there is still no cure. Medical science has made great strides in slowing down the virus and preventing infections in seronegative people. The disease has gone from being lethal to chronic. However, clearing it from the bodies of those currently infected is the goal scientists focus heavily on.

Medical science has turned to exploring genetic interventions when exploring ways to eradicate HIV from the body. Scientists have uncovered the various HIV genes and the viral proteins they produce.[1] This has facilitated the creation of drugs to block some of the virus’ activity inside the body. Now, science is focusing on how to genetically alter the human body to better fight against the virus. 

One such exploratory avenue is the genetic modification of the human immune system. Many people are familiar with the way HIV targets and damages the T-Cells, specifically the CD4 T-Cells. However, other parts of the human immune system are not as well known by the lay public, such as the B-Cells and the complement system. A new study out of Tel-Aviv involves the genetic modification of B-Cells using CRISPR and viral vectors. The future goal is a one-shot treatment for patients with HIV.[2]

Photo Source: Commonwealth Fund

The study examined engineering a person’s own B white blood cells to secrete high levels of anti-HIV antibodies in response to the virus.[2] Scientists have achieved some success in genetically engineering B-cells outside of the body. A few scientists have been able to use B-Cells engineered outside of the body to transplant into disease models with some success. However, the challenge is that using the approach for humans is very complicated. It requires very specialized medical centers, extensive blood compatibility testing of donor cells and recipients, and demanding protocols.[2] 

The promise of the new study out of Tel Aviv is that B-Cells inside one’s own body could be genetically modified. This simplifies the process and guarantees the compatibility of the genetically modified cells. The study was led by Adi Barzel, Ph.D. senior lecturer, and Alessio Nehmad, a Ph.D. student from the school of neurobiology, biochemistry, and biophysics at the George S. Wise faculty of life sciences and the Dotan Center for Advanced Therapies in collaboration with the Sourasky Medical Center.[2]

The process uses viruses in combination with CRISPR technology. CRISPR stands for Clustered Regularly Interspaced Short Palindromic Repeats.[3] CRISPR technology was developed from how bacteria arm their immune system. The CRISPR technology can specifically identify specific stretches of a genome and cut it open. The Tel-Aviv study involves cutting open the DNA of B-cells and inserting genetic code that makes the cell generate neutralizing anti-HIV antibodies. 

Photo Source: Genetic Engineering & Biotechnology News

Two viral carriers are used to ‘infect’ the B-cells.[4] This is not a harmful infection. The viruses infect the B-Cells then the CRISPR technology cuts into the B-Cell genome and the proper loci (or genetic location). At that point, the genetic “snippet” that codes for the anti-HIV neutralizing antibody is inserted into the genome and closed. Going forward, the cells begin to secrete the new anti-HIV antibodies. Encountering HIV in the blood stimulates the B-Cells replicated and secrete even more neutralizing antibodies. The most crucial note is that when the HIV virus changes or mutates, the newly engineered B-Cells will also change accordingly to fight the new viral variant.

This study is essential as it could lead to a vaccine or one-time treatment. Additionally, the same technology could be developed to treat other infectious diseases or certain cancers caused by viruses, such as cervical cancer.

[1] Li, G., Piampongsant, S., Faria, N.R. et al. An integrated map of HIV genome-wide variation from a population perspective. Retrovirology 12, 18 (2015). https://doi.org/10.1186/s12977-015-0148-6
[2] FCould a One-Shot Treatment for Patients with HIV Be on the Horizon? (2022, June 14). Retrieved from https://www.genengnews.com/virology/hiv/could-a-one-shot-treatment-for-patients-with-hiv-be-on-the-horizon/
[3] Broad Institute. (2022). What is “CRISPR”? Retrieved from https://www.broadinstitute.org/what-broad/areas-focus/project-spotlight/questions-and-answers-about-crispr
[4] Tel-Aviv University. (2022, June 13). A new technology offers treatment for HIV infection through a single injection. Retrieved from https://medicalxpress.com/news/2022-06-technology-treatment-hiv-infection.html

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.