When You’re Still Sick: Living with Long-COVID and HIV

By: Marcus J. Hopkins, ADAP Blog Guest Contributor, and Founder & Executive Director of the Appalachian Learning Initiative (APPLI)

Recently release research in The Lancet has found that, in addition to Long COVID, other respiratory ailments (Acute Respiratory Infections, or ARIs), such as colds, flus, and pneumonias, are associated with a wide range of long-term symptoms more than four weeks after the acute infection (Vivaldi, Pfeffer, Talaei, Basera, Shaheen, & Martineau, 2023).

This article was sent to me by Brandon M. Macsata, CEO of ADAP Advocacy, after graciously allowing me to cancel my attendance at the most recent Health Fireside Chat in Philadelphia due to a respiratory ailment.

“I read this article and said, ‘Hmmm…sounds like Marcus.’”

And it did.

On July 14th, 2023, I attended an outdoor ABBA tribute band concert with my mother and stepfather, but left early because I was feeling sick. I got home, and within twelve hours, I could barely breathe and moving was a chore. The following Monday, I tested myself for COVID, and got a negative result, so I thought, “Okay…must just be a summer cold.”

And then, it lingered.

By August, I’d spent most of July sleeping ~12 hours a day, between sleeping at night and intermittent naps throughout the day. My waking hours were spent coughing for so long I would literally lose consciousness from the lack of oxygen and come to a few moments later to find myself slumped over in bed and disoriented.

I had to push back several deadlines with clients, and when I reached out to my Primary Care Physician (PCP, who is also my Infectious Disease, ID, doctor), they recommended I go to Urgent Care for testing, where I was given a breathing treatment while they tested me for fourteen different respiratory ailments, from multiple strains of COVID to flu to tuberculosis, took X-Rays of my lungs, and sent me home with an inhaler, a strong antibiotic, and instructions to rest.

Another week went by, and there were no changes. Finally, my ID doc agreed to see me, where I was put through another battery of tests to see if non-ARI issues were to blame for my symptoms, including thyroid function, testosterone levels, prostate-specific antigen (PSA) levels, lung function, toxoplasmosis (from my eight cats), and virtually every other disorder or disease that are common for People Living with HIV/AIDS (PLWHA). After several hours, I left with a steroidal inhaler, a new statin drug, and additional orders to rest.

Another month went by, and my symptoms continued. 

It’s been three months since my initial illness, and still, I find myself regularly out of breath, physically exhausted from simple tasks such as walking down the stairs or into the kitchen, and suffering from neverending bouts of intestinal issues. Ultimately, they determined I must have initially had a negative reaction to receiving a second Shingrix vaccine on July 12th—a claim that seemed plausible, but still unlikely.

And then, Brandon sent me The Lancet article.

These symptoms I am still experiencing align perfectly with those described in The Lancet. Patients who had Non-COVID ARIs were more likely than COVID patients to report certain symptoms, including diarrhea, sleep problems, and coughing. They were also likely to report muscle or joint pain, difficulty concentrating, and lightheadedness or dizziness (Figure 1):

Figure 1.

Regularly Reported Symptoms by Patients Dependent Upon Infection Status

Photo Source: The Lancet

While this research does not definitively answer the underlying question, “What the Hell is Wrong with Typhoid Marcus,” it does provide me with another piece of information to send to my ID specialist for consideration.

One of the most humiliating parts of living with a chronic condition, like HIV/AIDS, is having to navigate the various conversations we must have with any number of parties to explain our health issues without opening ourselves up to unwanted or undue levels of scrutiny. Some of the conversational barriers we must overcome include:

1. How do we communicate our symptoms to our healthcare providers without coming across as a hypochondriac?
• Will our providers believe us? (This concern is particularly felt by persons of color or of trans experience)
• Will additional tests or examinations provide us with definitive answers?
2. How do we communicate our health issues with our employers or clients without risking our employment or incomes?
• Will our employers or clients be understanding of our health challenges and willing to extend deadlines so that we are able to meet them?
• Will our employers or clients consider these delays unacceptable and terminate our employment or contracts? If so, is there any recourse?
3. How do we communicate our health issues to friends and loved ones?
• Will our friends understand that we may not have the capacity or ability to respond to their inquiries about our health?
• Will our family members understand that we may not have the energy or ability to live up to familial obligations?
• Will anyone be able or willing to help us pick up the slack, in terms of chores, daily tasks, or caring for dependents?

When it comes to our incomes, how will we navigate the very real possibility that our incomes will suffer if we’re physically unable to work? Will we be able to make rent? For PLWHA, is there an immediate support system in place that can quickly respond to our needs as they relate to utility and housing costs, given the dysfunction that typifies the Housing Opportunities for Persons with HIV/AIDS (HOPWA) program?

Luckily, my clients have been largely understanding and accommodating, in no small part because I, personally, am an open book when it comes to my health. Other PLWHA may have neither the luxury of being open about their health issues nor the interest in telling others about their health. This is another area where PLWHA must navigate what level of disclosure is right for them, if any at all.

So, here we are.

I am slated to fly to Washington, DC, next week to attend an in-person meeting, and…if I’m being honest, I’m not certain whether or not I will have the energy to do so.

This places me in the very frustrating position of having to explain to the organizer that I will have to attend virtually, even though I confirmed my in-person attendance in July…before all of this started.

Hopefully, I’ll be able to return to some semblance of normal health sooner, rather than later. In the meantime, I’ll keep using my inhaler and resting.

References:

Vivaldi, G., Pfeffer, P.E., Talaei, M., Basera, T.J., Shaheen, S.O., & Martineau, A.R. (2023, October 06). Long-term symptom profiles after COVID-19 vs other acute respiratory infections: an analysis of data from the COVIDENCE UK study. The Lancet. https://doi.org/10.1016/j.eclinm.2023.102251.

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 Training in General Medicine

By: Marcus J. Hopkins, Policy Consultant

HIV in the United States is an issue that isn’t going away, anytime soon, despite the fact that the incidence of new infections has continued to decline annually since 2012 (Centers for Disease Control and Prevention, 2018). Other bright spots exist on the HIV front, as well:

• The majority of HIV treatments released since 2010 have been easy-to-tolerate, single-pill regimens, cutting down on the number of medications patients have to take to achieve and sustain viral suppression;

• Patients no longer have to wait until they are diagnosed as “AIDS” in order to begin treatment (as was the case when I was first diagnosed), initiating treatment immediately upon receiving an HIV diagnosis;

• Fourth- and Fifth-Generation HIV combination testing assays have reduced significantly the time between initial infection and the time when HIV can be detected down to 1 month or 14 days (respectively);

• The reality that treatment will soon be available in once-monthly long-term injectable form; and

• Data indicating that people with undetectable HIV viral loads cannot transmit the disease to others.

These bright spots all point to one thing: the time has come to begin taking HIV out of the realm of specialized medicine, and into the general practice.

When HIV first hit the medical scene in the early-1980s, circumstances required that the disease become the provenance of Infectious Disease (ID) specialists.  As times have progress, however, HIV has become increasingly easier to diagnose, treat, and manage, so much so that conversations need to be had about beginning to shift at least some aspects of treatment off of ID docs, and over to General Practitioners (GPs).

This is particularly true when it comes to prevention – a task which was supposedto be falling to GPs in the form of biannual HIV, STD, and STI testing, but which GPs have been notoriously lax in doing (a topic for another blog, really). That said, we have at our fingertips one of the most effective methods of preventing HIV transmission in the history of the disease: Pre-Exposure Prophylaxis (PrEP).

Photo Source: POZ

PrEP, for the uninitiated, is the medical repurposing of HIV drugs – Truvada (emtricitabine and tenofovir disoproxil fumarate) and, soon, Descovy (emtricitabine and tenofovir alafenamide fumarate) – that, when taken properly, can prevent the spread of HIV via sexual contact by more than 90% and by more than 70% among People Who Inject Drugs (PWIDs). This is an amazingtool that can be used to essentially eliminate the risk of HIV transmission in the U.S. and, potentially, around the world.

The problem? Nobody’s using it.

In 2017, there were a total of 100,282 PrEP users in the United States (AIDSVu, 2019). There were roughly 1,008,929 people living in the United States who are diagnosed with HIV in 2016 (CDC), and the total U.S. population is 327,200,000. If we subtract that 1,008,929, we’re left with approximately 326,191,071 people in the nation who are notinfected with HIV. That means that 0.03% of the non-HIV-infected U.S. population was prescribed PrEP.  Granted, not every single one of those 326,191,071 people face a high risk of HIV infection, particularly if take into account the number of children. That said, the number of PrEP users is astonishingly low.

Among the various barriers to receiving PrEP – financial barriers, social stigma-related barriers, geographic barriers – perhaps the biggest hurdle faced by patients who would like to take advantage of this groundbreaking prevention method is that few medical providers know anything or enough about the drug, its utilization, and HIV to be comfortable prescribing the regimen. This is troubling, because PrEP – the medication – can be prescribed by literallyany prescribing physician (although payor approval may require consultation with or prescribing by a ID specialist).

A recent study published in the Journal of General Internal Medicine found that even though 96% of 229 internal medicine residents surveyed had heard of PrEP, more than half rated their knowledge of the medication and its side effects as only fair or poor (Terndrup, et al., 2019). The authors write, “Residents who rated their knowledge more highly reported a greater likelihood of prescribing PrEP in the future.”

Photo Source: Business Insider

Essentially, the more physicians know about PrEP, the likelier they are to prescribe the regimen – a drum that PrEP advocates and activists have been beating since the regimen first became available in 2012. Seven years after it was first made available for prevention purposes, and only 0.03% of the non-HIV-infected U.S. population is utilizing this tool? That’s simply unacceptable.

With all of these advances in HIV prevention tools and treatment, for proactive patients (like myself), HIV has largely become a “maintenance” disease. I take my meds every night, at Midnight, I see my ID specialist twice a year, and the majority of our conversations are collegial in nature about my work in viral hepatitis. I have my blood drawn, I see my Ryan White caseworker, and I have my prescriptions renewed. I am a low-maintenance patient.

For me, and patients like me, my HIV maintenance is something that could essentially be shifted off onto a GP, allowing my ID specialist to focus his time and efforts onto patients with greater needs and/or challenges. This additional focus could potentially allow those higher-maintenance patients to become better stewards of their own health, eventually allowing them to ideally move their treatment over to a GP, as well. In this ideal scenario, where GPs are better educated, trained, and knowledgeable about HIV and its various treatment regimens, this could potentially open up dozens of new provider options, reducing the need to travel to ID specialists, and instead receive treatment from someone more local.

For patients who are not living with HIV, increased GP training, education, and knowledge about HIV and its prevention via PrEP has the potential to exponentially increase utilization of PrEP and decrease new HIV infections, even among PWIDs – a growing concern in areas of the country hardest hit by the opioid epidemic (i.e. – rural and suburban areas of the country). In areas where ID specialists are rare, the option of being prescribed a preventative medicine to prevent HIV infection by a local GP would be a godsend.

Terndrup’s study indicates that residents are more likely to prescribe if they have more knowledge. This is something that can and should be easily provided to them, and it is incumbent upon those in charge of these residency programs to begin instituting HIV training within their programs.

References:

• AIDSVu. (2019). 2017 PrEP Data – AIDSVu. Atlanta, GA: Emory University: Rollins School of Public Health: AIDSVu: Tools & Resources. Retrieved from: https://aidsvu.org/wp-content/uploads/2019/01/AIDSVu_State_PrEP_2017_2.xlsx
• Centers for Disease Control and Prevention. (2018, November). HIV Surveillance Report, Vol. 29. Atlanta, GA: United States Department of Health and Human Services: Centers for Disease Control and Prevention: National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention: Division of HIV/AIDS Prevention. Retrieved from: https://www.cdc.gov/hiv/pdf/library/reports/surveillance/cdc-hiv-surveillance-report-2017-vol-29.pdf
• Terndrup, C., Streed, Jr., C.G., Tiberio, P., Black, M., Davis, J., Apfel, A., Blackstock, O.J., Edelman, E.J., & Berkenblit, G. (2019, April 24). A Cross-sectional Survey of Internal Medicine Resident Knowledge, Attitudes, Behaviors, and Experiences Regarding Pre-Exposure Prophylaxis for HIV Infection. Journal of General Internal Medicine. DOI: https://doi.org/10.1007/s11606-019-04947-2

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.