Nation's HIV Drug Supply Secure Despite Coronavirus Pandemic

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

****UPDATED APRIL 24, 2020 - 5:22 P.M. EST*****

The ADAP Advocacy Association has fielded countless inquiries from people living with HIV/AIDS expressing concerns over the novel Coronavirus ("COVID-19") and its impact on the nation's drug supply chain. Namely, their concerns have centered around potential drug shortages of the anti-retroviral medications for the treatment of HIV/AIDS. No such drug shortages are foreseen for these medications over the coming year, thanks to the assurances extended by the drug manufacturers AbbVie, Janssen Pharmaceuticals, Gilead Sciences, Merck. Theratechnologies, and ViiV Healthcare.

Photo Source: master control.com

The ADAP Advocacy Association contacted each company about the patient community concerns, and the respective drug manufacturers provided the following statements.

• ABBVIE STATEMENT:

"AbbVie is closely monitoring product demand and supply levels throughout our global network to ensure adequate and effective distribution. While helping respond to the COVID-19 crisis is a high priority, AbbVie is committed to protecting the supply of Kaletra/Aluvia for HIV patients. AbbVie is actively assessing the increased demand for Kaletra/Aluvia and has taken steps to increase supply for COVID-19 patients without impacting treatment supply for HIV patients. Our priority is to ensure uninterrupted supply for HIV patients around the world."

Read the AbbVie statement online.

• GILEAD SCIENCES STATEMENT:

"Over the last several weeks, we know you have heard from many of your constituents who are concerned the novel coronavirus pandemic could impact their ability to obtain HIV medication. We wanted to reach out to assure you there are currently no manufacturing concerns or supply shortages with any Gilead products, including our HIV portfolio.

Gilead’s global commercial supply chain is robust and resilient with the right processes in place, geographic diversity in our supply chain and enough of the materials required to make our medicines. We have done this purposefully and carefully to enable continued supply of Gilead’s medicines in a challenging situation like the one we face today. As a result, we are not seeing, and we do not anticipate, shortages of Gilead marketed products, including our HIV medicines, in the foreseeable future.

Our supply network provides both flexibility and redundancy, and our inventory levels are robust, with no immediate or foreseeable risk to our supply chain. For more information, please see this article on Gilead.com. We are also working closely with our partners to monitor travel restrictions and border closings. There are currently no restrictions or delays limiting the transport of goods, including medications.

Some wholesalers have proactively implemented allocation limits on several pharmaceutical products, including HIV medications. In the event that pharmacies experience a temporary lack of inventory, they should contact their wholesaler to request an exception to these limits. When necessary and approved by the wholesaler, Gilead is able to drop-ship directly to a pharmacy. A complete list of authorized distributors can be found here.

Additionally, while we have paused enrollment for some clinical studies, we have made important exceptions for studies where patient outcomes are critically impacted. This includes studies of our investigational HIV capsid inhibitor GS-6207 in people who have multi-drug resistant HIV and therefore have limited treatment options. We will also continue to prepare for new study initiations in the face of temporary delays to most study enrollments.

During this uncertain time, it is more important than ever that we stay in close communication. We do not see any potential disruption to our supply chain now or in the foreseeable future. Gilead is committed to ensuring you have up-to-date information on our efforts to help the HIV community respond to the novel coronavirus pandemic and will keep you apprised of any changes."

Read the Gilead Sciences statement online.

• JANSSEN PHARMACEUTICALS STATEMENT:

"In our role as a global health leader, Johnson & Johnson is closely monitoring the COVID-19 (coronavirus) situation and taking steps to help prevent the spread of the virus as well as exploring the potential for a vaccine.

We have robust business continuity plans in place across our global supply chain network to prepare for unforeseen events and to meet the needs of the patients, customers and consumers who depend on our products.  These steps include maintaining critical inventory at major distribution centers away from high-risk areas and working with external suppliers to support our preparedness plans.

We are closely monitoring product demand and supply levels across our global network to ensure adequate and effective distribution, and working diligently to meet patient, customer and consumer need.

Below is a summary by sector:

​​​​​​​- Pharmaceutical: While this remains a dynamic situation, we do not foresee pharmaceutical supply interruptions related to COVID-19 at this time.

- Medical Devices: While this remains a dynamic situation, the vast majority of our global medical device manufacturing is running at or near normal capacity, and we are not experiencing product supply interruptions at this time.

- Consumer: We are experiencing increased consumer-driven demand with certain products and markets, which we are currently meeting in a controlled manner. We are taking all possible measures to maximize product availability.

As a leader in global health, our top priority remains our patients, customers and employees. We are partnering with global and local health authorities to address immediate and long-term health care needs, to ensure sustainable supply of our critical medicines, as well as to research potential vaccines and therapeutics.

We will remain on the front lines of this health crisis, bringing our full resources and minds to combat it."

• MERCK STATEMENT:

"We continue to track the COVID-19 outbreak closely and are focused on the safety of our employees and their families, continuity of supply and clinical trials, and supporting communities affected by this outbreak. Our thoughts are with the people of all affected areas. We would also like to extend our sincere appreciation to the many health care providers and volunteers who are doing so much to help affected patients and communities.

While supply and demand vary by product, we are not aware of any significant near-term impacts from COVID-19 on the production and supply of Merck's medicines and vaccines.  We have also assessed potential longer-term impacts of the outbreak. The situation is fluid, but at this point we do not anticipate impacts to our supply chain unless the outbreak were to continue for an extended period of time."

Read the full Merck statement online.

Read the supplemental Merck statement online.

• THERATECHNOLOGIES STATEMENT:

"At Theratechnologies, we presently have enough inventory, here in the U.S., for our 3 products and expect to be able to provide Trogarzo®, EGRIFTA SV™ or EGRIFTA® to all currently prescribed and new patients during the next 12 months. In addition, the production for all of our products is not affected at this stage by the COVID19 situation."

• ViiV HEALTHCARE STATEMENT:

"In these uncertain times, the safety and well-being of our employees, customers, partners, and people living with HIV remains ViiV Healthcare’s top priority. As the coronavirus (COVID-19) continues to affect communities in the US and around the world, our hearts go out to those impacted, and we want to share our response to the evolving situation.

We have been closely monitoring the COVID-19 pandemic and its impact. We believe it is our responsibility to prioritize two things:

- our commitment to supporting the health and safety of our employees, customers, partners, and people living with HIV;

- protecting our ability to manufacture and supply medicines

Consistent with our values and role as the only global healthcare company solely focused on HIV, we will continue to make decisions informed by the latest science and in consultation with leading health authorities.

In-line with these principles, we have implemented a variety of measures to help prevent spread of disease and minimize disruption to our operations.

- Ensuring medicine supply and patient access. At this time, even with loosened restrictions on early and various quantity refills by US government and private payers, there is no impact to supply of our medicines in the US as a result of the COVID-19 pandemic. We are continuing to closely monitor the situation and will keep you updated on any changes. We have supply chain planning in place for our products, which includes measures to secure reliable supply, such as holding strategic stock as well as working with our wholesalers, pharmacies and direct purchasers to ensure they are responding to the demand for our medicines from providers and people living with HIV.

- Caring for our people and communities. We have taken several temporary measures to protect the well-being of our employees and the communities in which we operate. We have directed our field teams to suspend all face-to-face interactions and refrain from visits to clinical offices, healthcare centers and other customer offices. Virtual interactions will be implemented to ensure we continue to provide support and ensure adequate supply and access to resources and our medicines.

- Contributing to the fight against COVID-19. We are conducting some exploratory research to see if our medicines may have the potential to demonstrate impact, although it is too early to speculate on any benefit. We are pleased that our major shareholder, GSK, is contributing its science and expertise where they can have most impact on the outbreak. They recently announced a research collaboration with Clover Biopharmaceuticals, providing their pandemic vaccine adjuvant technology to scientists at Clover who will use their cutting-edge research to evaluate the combination of GSK’s adjuvant with its promising vaccine candidate, S-Trimer.

Patient focus is one of our core values and we are proud of our employees and their commitment to people living with HIV during these challenging times.

The situation is changing rapidly, and we are closely monitoring this as we seek to safeguard the health and well-being of our employees, limit the spread of the disease, and continue to make our products available to all who need them. We will continue our vigilance in assessing the situation."

Read the ViiV Healthcare statement online.

The U.S. Food & Drug Administration (“FDA”) has made available information on the current drug shortages online at https://www.fda.gov/drugs/drug-safety-and-availability/drug-shortages.

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.

HIV Medications and the Treatment of Coronavirus

By: Marcus J. Hopkins, Policy Consultant & Guest Contributor 

Over the past few months, numerous theories have been bandied about regarding the efficacy of certain HIV-centric drugs being potentially effective in treating novel coronavirus (SARS-CoV-2, or COVID-19). Moreover, stories continue to be published claiming that three drugs, in particular – ritonavir, lopinavir, and darunavir – may be used to “cure” COVID-19, a popular, yet untested idea because of the drugs’ effectiveness in treating certain other SARS (Severe Acute Respiratory Syndrome) strains (Journal of the American Medical Association, 2020). Again, these theories are untested.

Photo Source: Business Insider

Whenever a new pandemic arises, questions about why existing drugs aren’t being used to treat novel infections arise. Why, after over a century of medical innovations that, before the 19th Century, would’ve been labeled “Witchcraft,” are these pandemics catching us so frequently by surprise? The answer is that each virus is different; each straight of each virus family is different; not every drug that treats one strain of a virus will prove effective in another.

When I was first tasked with writing this piece, my prompt was:

There are lots of stories about coronavirus and the impact on HIV-positive folks. Yet, there are also lots of updates about HIV antiretrovirals being used to treat (and even cure) folks with the virus. So, does it stand to reason an HIV-positive person adherent to their therapy might be more protected?

So, I got down to some research. Sadly, the answer I’ve gotten from my own Infectious Disease doctor is:

There’s no real evidence to suggest that those specific HIV medications are 100% effective in treating COVID-19; there’s also no real evidence to suggest that people who are taking those medications and thus have them in their system are any more protected than anyone else.

The problem with novel viruses is that they often surface and retreat before any real, definitive testing can be completed. When a new one comes along, scientists rely upon things that have worked in the past to try to cobble together a workable solution in a short amount of time. Moreover, Janssen, maker of darunavir, released a statement on Monday, March 16th stating that there is “…insufficient evidence to suggest that…darunavir can effectively treat COVID-19,” and that “…HIV drugs are being considered as possible treatment options largely due to limited and ‘unpublished virological and clinical data’ that demonstrated they were effective in treating the SARS coronavirus” (Jagielski, 2020).

What is clear is that people living with HIV who have achieved viral suppression through adherence to a treatment regimen are shown to be generally healthier than people with higher levels of the HIV virus detectable in their blood. That doesn’t mean, however, that we are any more or less susceptible to opportunistic infections. Respiratory ailments, in particular, have historically been bad news for people living with HIV.

So, the verdict at this point is: “We don’t know what we don’t know, and therefore, should act with an abundance of caution.”

References:

• Jagielski, D. (2020, March 16). Johnson & Johnson Says There's Insufficient Evidence Its HIV Drug Can Treat COVID-19. Alexandria, VA: The Motley Fool: Investing. Retrieved from: https://www.fool.com/amp/investing/2020/03/16/johnson-johnson-says-theres-insufficient-evidence.aspx
• Young, B. E., Ong, S. W. X., Kalimuddin, S., et al. Epidemiologic Features and Clinical Course of Patients Infected With SARS-CoV-2 in Singapore. JAMA. Published online March 03, 2020. doi:10.1001/jama.2020.3204 Retrieved from: https://jamanetwork.com/journals/jama/fullarticle/2762688

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.

Coronavirus & Living with HIV

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

The World Health Organization ("WHO") this week declared the novel coronavirus ("COVID-19") a global health pandemic, which is a designation given to a global disease outbreak. Previously, such designations were given to the Spanish Flu in 1918, Asian Flu in 1957, and HIV/AIDS in 1981 (History.com). Increasingly, many people living with HIV are asking if they should be concerned about the coronavirus? This week's blog includes several important resources.

Photo Source: ABC57 - South Bend, Indiana

The U.S. Centers for Disease Control & Prevention ("CDC") website is making available real-time information about COVID-19, which is being made available online from the White House Coronavirus Task Force.

• Things you should know about coronavirus if you are living with HIV (The most effective way to prevent the spread and infection of the coronavirus is to practice good hand and respiratory hygiene). This article is authored by Rebecca Kelly in Gay Community News.
• Here's The Latest Advice From Experts About Coronavirus And HIV. This article is authored by Patrick Strudwick in Buzzfeed. 
• For now, no evidence to show that people with HIV are at greater risk of coronavirus. This article is authored by Roger Pebody in aidsmap.com.
• How To Avoid Coronavirus? Lessons From People Whose Lives Depend On It. This article is authored by Anna Maria Barry-Jester in Kaiser Health News.
• Will That Prevent COVID-19? A Pathologist Grades Coronavirus Precautions (From fist bumps to face masks -- an evaluation of disease determent). This article is authored by Judy Melinek, M.D. in MedPage Today.
• Track the Coronavirus Outbreak on Johns Hopkins Live Dashboard (Realtime infection and death data from five sources). This resource is coordinated by Molly Walker in MedPage Today.

If social distancing isn't an option to reduce exposure to COVID-19, then please follow the WHO's basic protective measures against the new coronavirus.

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.

I Benefit from HIV Co-pay Assistance Programs; CMS Wants to Change That

By: Guy Anthony, President/CEO, Black, Gifted & Whole Foundation, and Board Member, ADAP Advocacy Association

I found myself both shocked and appalled when reviewing the latest Notice of Benefit and Payment Parameters (NBPP) for 2021 issued by the Centers for Medicare and Medicaid Services (CMS) recently. The proposed NBPP, which is released annually, attempts to exclude manufacturer coupons from being counted towards a patient's annual deductible on cost-sharing.

As someone that has been living with HIV for over a decade, and a direct beneficiary of the drug manufacturer co-pay assistance program, I have an intimate understanding of the far-reaching and potentially devastating effects this decision could have on those in the HIV and HCV community.

Photo Source: Sermo

How Many People Will Be Affected by the Changes?

Over one million people in the U.S. live with HIV and over three million live with chronic HCV. Those who have these conditions come from all walks of life. They're certainly not limited to the LGBTQIA+ community. However, those from disadvantaged backgrounds are much more likely to have the disease than those that hail from affluent socioeconomic backgrounds.

According to the Centers for Disease Control and Prevention (CDC), HIV prevalence in U.S. poverty areas matches those of countries designated as having a generalized HIV epidemic such as Burundi, Ethiopia, and Haiti. What's more, HIV prevalence rates in urban poverty areas are inversely related to annual household income – the lower the income, the higher the HIV prevalence rate.

In other words, the poorer you are, the more at risk you are of contracting the disease. Furthermore, due to the nature of chronic diseases such as HIV, those living with these conditions find it much harder to secure long-term work due to issues surrounding immunodeficiency. This is something I have experienced myself, and employment with HIV is not easy to maintain.

Since a great deal of HIV and HCV cases are found in lower-income households, these changes are going to have a dramatic impact on a considerable proportion of those one million-plus people living with the condition.

How Does Co-Pay Assistance Help Those with HIV?

As you know, those with chronic conditions such as HIV and HCV have had the financial burden of the disease reduced thanks to co-pay assistance programs provided by drug manufacturers in conjunction with additional support from the AIDS Drug Assistance Program (ADAP). Co-pay assistance ensures that financially-challenged individuals can receive the drugs they need to live with the disease.

Everyone living with HIV and HCV knows and appreciates how important these programs are to the community. I've long advocated as part of my awareness campaigns that co-pay assistance and ADAP are pretty much the reason why HIV is no longer a death sentence, since many patients can better "afford" to stay alive. But this move to exclude manufacturers coupons by the CMS is going to hit those who need financial relief the most.

What is the Likely Fallout from These Proposed Changes?

The most immediate ramification will come in the form of reduced medication adherence. Suddenly those that enjoyed financial relief will have to deal with the impact of high deductibles and high cost-sharing expenses. Most individuals living with HIV and HCV need to take at least two antiretroviral drugs every single day. It doesn't matter who you are; anyone can see that these changes will force some people to choose between money and medication. It makes me sick that we live in a country that people with chronic conditions such as HIV might not be able to get access to necessary drugs, as prescribed by their doctor, as a result of a lack of financial means.

I know of individuals who potentially face a situation of not being able to afford the medication they need to live a normal life. One of those people happens to be me. It seems that the constitutional right to life and liberty has been thrown out the window. I think this has a lot to do with the continued stigmatization of conditions such as HIV and HCV. I am no less of a person because I have HIV, no one chooses to have this disease, so why have the rights of individuals within this community being gradually eroded?

Photo Source: Novartis

Help Us to Creat Change!

The CMS proposal to exclude manufacturer coupons would have genuinely concerning effects on the affordability of many medications within the regimens of HIV and HCV patients, including myself. In many cases, those living with these diseases will have to bear the financial burden as a result. For some, that burden will be too much.

As is the case for a lot of situations in life, it's going to be those without sufficient means that are going to find themselves the most adversely affected.

We need your help to stop this becoming a reality. Please contact your member of Congress and ask them to help stop this from happening to our community.

References:

• Denning, MD, MPH, Paul, and Elizabeth DiNenno PhD (2019, December 11). Communities in Crisis: Is There a Generalized HIV Epidemic in Impoverished Urban Areas of the United States? Centers for Disease Control & Prevention. Retrieved online at https://www.cdc.gov/hiv/group/poverty.html.
• McManus, K. A., Engelhard, C. L., & Dillingham, R. (2013). Current challenges to the United states' AIDS drug assistance program and possible implications of the affordable care act. AIDS research and treatment, 2013, 350169. https://doi.org/10.1155/2013/350169

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.

A Secure Drug Supply Chain is the Best Anti-Counterfeiting Technology We Have

By: Shabbir J. Safdar, Executive Director, The Partnership for Safe Medicines

There are several technologies that have been developed to identify and weed out counterfeit medicines, from serialization to edible security tags on individual pills, but no anti-counterfeiting technology can take the place of a secure, and well-enforced medication supply chain.

Serialization, a central part of our Track & Trace system, provides unique identifying tags on individual packages of medication at the point of manufacture. It is an effective means of quickly spotting fake medicine. However, if you allow members into your supply chain that aren’t effectively regulated, or that are sloppy, it will not prevent patient harm. Though it will make it easier to find the problem after the fact in a follow up investigation by checking the serial numbers against numbers from the manufacturer.

One of PSM’s board members is fond of saying that no technology can protect you when someone is intent on trading your safety to make a dollar. Missing holograms can be ignored, serialized product can be mixed or repackaged with non-serialized product, and other means of making more money and endangering the patient. Serialization will always find the problem after the fact, but our safety goal is higher: we want to prevent such products from ever reaching patients in the first place.

Edible tags, such as the one’s being developed at Purdue University can make identifying genuine pills easier, but again, vigilance on the part of supply chain members is key to their success. A patient may be very interested indeed to find out if their prescribed medication is genuine but if their doctor does not bother to check, the security of edible tags is pointless.

Patients seldom see the packaging of injectable medications such as Avastin, used in cancer treatment; Prolia and Aclasta, used to treat osteoporosis; and Botox, used in treatments ranging from cosmetic to dental and ocular. Every one of these injectable treatments has been counterfeited and successfully sold in the United States, because no one bothered to the genuineness of the medication by examining the packages or checking lot and serial numbers or they had a financial incentive not to. In the case of counterfeit Avastin, U.S. authorities only discovered that American doctors were treating their patients with it when the United Kingdom’s MHRA alerted the FDA in 2012 to warn them that a fake version was in circulation.

If members of the secure supply chain do not carefully examine medication packaging and pills to verify that they genuine using anti-counterfeiting technology, drug counterfeiters can easily fool them with similar packaging and identical-looking pills and vials. The visual spotting of a fake by its label, box, or pill shape and color is imperfect, at best.

Lastly, there has been a lot of press about using blockchain technology to keep counterfeit drugs out of the supply chain. Manufacturers can use technological tracking of their products throughout the supply chain, but if any member of the supply chain ignores digital footprints for medication or fails to recognize their lack, blockchain falls apart and does nothing to protect patients. The best technology to protect patients from counterfeit medication is strong regulation, a secure supply chain, and clear consequences for manufacturers, wholesalers, distributors, and medical professionals who ignore or sidestep the supply chain. In every case where counterfeit medicine has reached patients, bad actors consciously breaking the supply chain put fake drugs in the hands of doctors, clinics, and pharmacies..

References:

• Lilly Serialization: https://www.lilly.com/products/anti-counterfeiting/serialization
• TC Medical: https://www.safemedicines.org/2015/05/canada-based-company-that-acted-as-drop-shipper-pays-33-million-fine-in-misbranded-drug-smuggling-case.html
• Securing Industry edible tags: https://www.securingindustry.com/pharmaceuticals/purdue-scientists-detail-edible-security-tags-for-medicines/s40/a11237/#.XjryFC2ZO9
• Black Market Cancer: https://www.safemedicines.org/2018/08/imported-black-market-cancer-meds.html
• Black Market Osteoporosis: https://www.safemedicines.org/2013/01/the-us-food-and-drug-administrationfda-has-issued-warning-letters-to-20-us-doctors-that-they.html
• Black Market Botox: https://www.safemedicines.org/2014/10/black-market-injectable-cosmetic-treatments-a-nationwide-problem-10-22-14.html
• PSM Fake Avastin: https://www.safemedicines.org/2012/02/mhra-fda-cooperation-rousts-counterfeit-cancer-drugs.html
• Reuters Blockchain: https://www.insurancejournal.com/news/national/2020/02/21/559057.htm

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.

Barriers Ahead for People Living with HIV on Social Security Disability Insurance?

By: Marcus J. Hopkins, Policy Consultant & Guest Contributor 

It’s been a tough few years for people living with HIV…at least as it relates to the determination of healthcare and disability benefits. After nearly a decade of hard-fought and mostly won battles to increase access to healthcare services and improve the quality of life for people living with HIV, the Trump Administration has spent three years doing its damnedest to roll back every one of those improvements via a death from a thousand cuts.

Those who are reading the ADAP Advocacy Association blog are likely familiar with HIV and the deteriorating effects the disease has on the body, particularly in those who have lived with the disease for a long time, have endured the effects of some of the earliest HIV medication regimens, have allowed the disease to go untreated, or are simply older and living with HIV. This is why most benefits-related decisions involving HIV have, traditionally, been made by or in consultation with infectious disease advocates, healthcare providers, or scientists who can explain to government officials how the disease works and why it is important to ensure that people living with HIV are able to remain productive members of society.

The Trump Administration, however, has openly done away with the antiquated and ridiculous notion that important decisions require expert knowledge and input. Instead, decisions have been made with virtually no notice, catching advocates and experts off guard across every aspect of our national governance. Those working in and around HIV (and virtually every other infectious disease) have spent three years attempting to figure out what move comes next from an administration that is flighty, capricious, unwilling to listen to reason, and unable to forecast next moves any better than anyone else.

In a recent meeting of the Federal AIDS Policy Partnership, this was the common refrain: “We have no idea how to plan for 2020, much less for 2021, because nobody knows what’s going to happen, next.” This sentiment was applied to Medicaid coverage, Social Security Disability Insurance (SSDI), and the President’s much vaunted, but unfunded Ending the HIV Epidemic (EHE) plan designed to decrease the number of new HIV infections in the U.S. by 75% by 2025.

On the SSDI front, since March 1st, 2017, people living with HIV have been subject to a Continuing Disability Review (CDR) to determine whether or not they are “still disabled”. This decision was reached because, rather than acknowledging the long-term impacts of HIV on the human body, this administration has chosen, instead, to look at those who are able to live and work without enduring many of the long-term side-effects of early HIV regimens or the deterioration of the body that people living with HIV face as they age. This is the famous argument of, “Well, you don’t look disabled to ME,” put into cruel effect.

Photo Source: PCT Law Group, PLLC

CDRs generally fall into one of three categories: “Medical Improvement Expected” (six-month to 18-month reviews), “Medical Improvement Possible” (reviews every three years), and “medical improvement not expected” (reviews every seven years). The Trump Administration is proposing a new category called, “Medical Improvement Likely,” which would initiate reviews every two years.

While these changes may seem minute to those living without a disability (HIV-related or otherwise), one of the most onerous barriers to overcome is constant reverification of one’s disability. Each review requires constant and consistent documentation to be kept and maintained, trips to and from offices, and long waits that place a strain on disabled people and on those living in poverty. Moreover, this kind of review process fails to take into account that most cases of disability are not static; they tend to be sporadic in nature, with flares, seasonal peaks, and can vary in length and severity (Cokley, 2020). This is particularly true of people living with chronic illnesses, such as HIV.

There have been times where my ability to work was severely limited by my HIV, even though I was virally suppressed. When I lived in Los Angeles, for whatever reason, I was prone to longer-than-average colds, flus, and bouts of gastrointestinal fireworks that would last for days (the latter of which continues, to this day). At the time, I was waiting tables and attempting to go to school, and instead, I would be laid up in bed, not making money, and unable to attend classes in person (though I attempted to attend class via Skype/web cam as often as possible). This is the reality of living with HIV, and although I have never applied for SSDI coverage, I probably should have.

Photo Source: PDFfiller Blog

It isn’t just SSDI reverification that is burdensome; a change during the Obama Administration requires those of us who rely on the Ryan White Program and ADAP to submit documentation for reverification every six months, rather than once a year. Adding an additional review process is time consuming and, frankly, both exhausting, and unwarranted. The “savings” achieved by these reviews is largely outweighed by the amount of unnecessary administrative costs required to conduct these reviews and re-verifications.

As much as the President and his sycophants talk a good game about how much they’re doing for HIV in the U.S., the truth is that most of his proposals are almost certainly calculated to punish those already living with HIV while instead focusing on (still unfunded) efforts to reduce the number of new HIV transmissions. Worse, still, is that both his and his administration’s tendency to spring new rules and announcements on the country with virtually no notice makes planning for the future a near impossibility. The other common refrain I hear at almost every meeting is, “Hopefully, the next administration won’t be as chaotic.”

Hopefully, indeed.

References:

• Cokley, R. (2020, January 30). The next move in Trump administration's war on the disabled. Atlanta, GA: CNN: Opinion. Retrieved from: https://www.cnn.com/2020/01/30/opinions/trump-administration-social-security-disability-benefits-cokley/index.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.

U.S. Court of Appeals Strikes Down Trump Administration's Discriminatory 'Deploy or Get Out' Policy

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

In January 2020, the U.S. Court of Appeals for the fourth circuit upheld a lower court ruling in Roe and Voe v. Esper, which allows the two HIV positive members of the air force to continue their service. This ruling also will prevent the discharge of any other airmen based on HIV status alone (Buhl, 2020).

Previously, the U.S. Air Force has justified the discharge of military service members living with HIV under the ‘Deploy or Get Out’ policy, which was first introduced in February of 2018. This policy stated that any service member who is deemed non-deployable for over a year would be subsequently discharged. This policy unfairly affected service members living with HIV, as the long-standing HIV policies within the Air Force and United States military consider HIV positive members non-deployable (Allen, 2018).

The plaintiffs in the Roe and Voe v. Esper case first requested a preliminary injunction in February 2018 in the district court for eastern Virginia.

The most recent case of Roe and Voe v. Esper was filed in December 2018 by Lambda Legal and the Modern Military Association of America, with pro bono co-counselors Winston and Strawn. After filing in December, the appeals court opinion concluded that since the government didn’t consider the low possibility of transmission of HIV, the Air Force denied the service members of their right as employees able to serve.

“These servicemembers, like other HIV-positive individuals with undetectable viral loads, have no symptoms of HIV. They take daily medication—usually one pill, for some people two—and need a regular, but routine blood test. They cannot transmit the virus through normal daily activities, and their risk of transmitting the virus through battlefield exposure, if the virus can be transmitted at all, is extremely low. Although transmission through blood transfusion is possible, these servicemembers have been ordered not to donate blood,” said the opinion (Lambda Legal).

According to the Center for HIV Law and Policy:

“Military policies and regulations – most of them codified in the Uniform Code of Military Justice – set forth consequences for conduct by service members living with or at risk of HIV,” (HIV Law and Policy).

According to The Body, Roe and Voe v. Esper case is one of three cases challenging military policies against service members living with HIV. Two others are currently being reviewed.

“Even though my commanding officer and doctors wanted me to stay in, the informal board recommended discharge, then a formal board of three members recommended discharge,” Roe said in reference to his experience with the Air Force.

Scott A. Schoettes is the HIV project director at the advocacy group Lambda Legal, who helped represent Roe and Voe in their plea at the court of appeals.

“The military is really the only employer in the United States that’s still allowed to do this. Everybody else you can hold accountable. You can sue under statutory protections for people living with HIV,” said Schoettes.

Roe and Voe will be able to continue serving in the Air Force under the recent court of appeals ruling.

References:

• Buhl, L. (2020, January 16). Federal Court Upholds Injunction Preventing Discharge of HIV-Positive Airmen. The Body dot com. Retrieved from https://www.thebody.com/article/appeals-court-injunction-discharge-hiv-military?ap=2008
• HIV Law and Policy Military. (n.d.). Retrieved from https://www.hivlawandpolicy.org/issues/military
• Allen, S. (2018, September 19). The Danger of 'Deploy or Get Out' Facing HIV-Positive Troops. The Daily Beast. Retrieved from https://www.thedailybeast.com/the-danger-of-deploy-or-get-out-facing-hiv-positive-troops
• Opinion: Roe and Voe v. Esper. (2020, January 10). Retrieved from https://www.lambdalegal.org/in-court/legal-docs/roe_va_20200110_opinion

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.