Navigating a profit-driven health care system can prove dehumanizing at the best of times. This is particularly true for people living with HIV, especially during the COVID-19 pandemic, which has introduced an entirely new set of issues into the lives of people with HIV. One of these is a design flaw the system has been slow to address: interrupted access.
I experienced a lapse in care during the second week of March. The pandemic had started to impact New York, and I had just run out of my HIV medication. Though I was distracted by the loss of my main source of income as a dance writer and educator, I was intent on maintaining my health. Unfortunately, no one at my health clinic was responding to my calls.
Five days in, I finally started to panic. I had yet to receive a response from the pharmacy or from my health care provider. Fear of contagion meant that drop-in visits to my clinic had been suspended—and, much like with the long phone calls to unemployment centers, I never seemed to get through to anyone who could help me.
I was finally able to reach my advocate, who informed me that I had plenty of prescriptions left and that I should have called in five days before I had run out of pills. In fact, I had been calling since March 1, to no avail. When I went into my pharmacy for medication pickup, they told me that they had asked for new refills the week previously. According to my pharmacist, she was told that I had not come in for blood work and would not receive any new scripts until I did so.
In reality, my care provider had canceled my lab appointment because of COVID.
Two months later, I experienced a similar situation. Once again, my health clinic ignored my pharmacist’s request for refills. In what felt like a serious case of gaslighting, my provider told me that they hadn’t received the refill request. When I asked for new scripts to be sent over to solve the problem, I was told my pharmacy had to do that and that I couldn’t.
Feeling distressed, I called my pharmacist and discovered that she had sent the request to my previous provider. I hadn’t worked with that provider in over two years. The situation eventually resolved itself, though instead of taking accountability for her failure, my pharmacist told me that I should have called in as soon as I saw that my pills were running low.
I would have swallowed her blame if I hadn’t remembered that any time I ask for an early refill, I am told, “You need to calm down. You’re not out of medication yet.”
A Complicated Mess
It’s clear that the shift to COVID reality has caught many administrators off guard and widened preexisting holes in our health care system. A primary concern has been, and remains, access.
Zyra Gordon-Smith, D.N.P., APN—an assistant site medical director and service nurse practitioner for Howard Brown Health’s Inglewood location in Chicago—says that because of COVID, telehealth medicine visits have risen. While this is a blessing for many people, because it means that they no longer have to worry about transportation, it has caused others—who lack wifi, smartphones, secure housing, or technological savviness—to fall through the cracks.
“I wasn’t seeing my patients,” Gordon-Smith says, “and that bothered me.” Frequently, that was because patients didn’t know about alternative methods for making contact. Addressing my case directly, Gordon-Smith was pleased that I was able to state that I hadn’t received my meds.
“But what about people who didn’t know who to call?” she adds.
In addition to lacking technological know-how, Gordon-Smith says that depression, safety concerns, isolation, and a fear of unknown telephone numbers—even when it is from a doctor—have also prevented the community she serves from accessing care. But this isolation has not kept them from having sex.
Gordon-Smith says that many of her patients have not changed the behaviors that place them at risk for HIV acquisition: She has patients who aren’t practicing social distancing and who are testing positive for gonorrhea and chlamydia. And once a person has tested positive for a sexually transmitted infection, their likelihood of HIV seroconversion multiplies by a factor of four. This is particularly alarming because most of Gordon-Smith’s clients are Black, a community that has both drastically higher seroconversion and COVID-19 rates.
An additional challenge has been the closing of numerous pharmacies due to the protests against George Floyd’s murder. “A patient told me that he thought we permanently closed down,” Gordon-Smith says, “because there are a lot of clinics that still haven’t reopened.”
Jay Kostman, M.D., a master clinician at John Bell Health Center in Philadelphia, notes similar problems. He says that since COVID struck, his colleagues have received an influx of new patients who have lost care and access to medications because their providers closed their offices or terminated services.
He says another issue throughout Pennsylvania has been a lapse in the state’s special pharmaceutical program that provides insurance to many people, particularly those who have lost employment. The cause has been missing paperwork that gets lost in the mail. Given this current administration’s hostility toward the postal system, the prospect of undelivered, yet essential, mail is particularly frightening for patients who lack the means to engage with the systems that are meant to protect them, or to hold them accountable due to a sabotaged paper trail.
Self-Inflicted, Capitalistic Problems
The obvious solution for preventing an interruption in medication is issuing more than a 30-day supply, particularly during this pandemic, when many people—including myself—are worried about traveling. So why hasn’t this option been fully deployed?
Chelsea Gulden, M.S.W., the vice president of operations for RAIN—an HIV service organization based in Charlotte, North Carolina—points to the unfortunate profit-making model that governs most of the medical industry. “Some of that is because of 340B,” she says.
The 340B drug discount program allows HIV/AIDS clinics to receive funding through the Ryan White program to obtain prescription drugs at below-retail prices. Gulden explains, “If you have private insurance and they’re able to get 340B dollars, there’s a bigger profit margin on once a month than multi-month prescriptions.” If you have the AIDS Drug Assistance Program (ADAP) like I do, that means that your private insurance has been paid for by the state, and so you fall into this trap.
Gulden says that her HIV medication arrives three days early every month, which has allowed her to build up a backlog. I have not been able to create a surplus, because my providers refuse to grant me this grace period. Instead, I have been told by doctors to skip a few days a month so that I am able to cover any shortages that I might run into. This, even though the accepted knowledge has always been, “Don’t skip a day of medication.”
Though I have asked for more than one month of pills at a time on numerous occasions, I have always been denied and treated as if I were attempting to sell my meds on the black market for making the request.
Kostman says, “This speaks to an unfortunate stigma that exists for some providers.” Gulden says this is true even in Charlotte, where everyone knows everyone else’s business—which “creates its own set of problems for access and disclosure.”
Speaking to the unique problems brought on by COVID that she has seen, Gulden mentions that reduced on-site hours and other COVID prevention techniques, like revolving teams of staff, mean information and tasks may be mishandled and responses not as frequent. Additionally, she has seen patients who had fallen out of care attempting to return, which in some cases has strained capacity and client-to-provider communication.
When this happens, Gulden says that she reminds her colleagues that they have an ethical obligation to do no harm and to help where they can. Recalling a situation with a client who became upset after being asked to fill out a COVID-19 questionnaire, Gulden says that she de-escalated the situation by getting to the root of the problem: The client did not know how to read. Because he was met with impatience, he responded by digging in his heels.
Gulden says this is a reminder that “it shouldn’t matter how people present. And if they’re presenting in a way that is less pleasing, that probably indicates a bigger need for assistance.” It’s an essential call for compassion, especially during this period of heightened anxiety.
Bashirat Olayanju, M.P.H., vice president of care for AIDS Foundation of Chicago, reports that AFC responded to the closing of pharmacies by creating a routing system that transferred client medications to different locations so that care went uninterrupted. While embracing the blessings brought by telemedicine conferences, Olayanju reiterates that access to smartphone technology or wifi service is unequal among her clients. She says that AFC has tackled this issue by applying for funding from a wide net of sources and by leaning into its Resource Coordination Hub.
This hub, which was launched before the pandemic took effect in the U.S., has allowed AFC to create a COVID relief fund to assist clients with rental, food, utility, and phone payments.
But the strongest solution is the one that starts with clients themselves.
Olayanju says that something patients can do to help themselves, their community, and providers is to join a consumer advisory board. “We really rely on them as our sounding boards for a lot of what we do,” she says. “That's where the decisions are being made. You are the ones experiencing it day-to-day, and we need that feedback to be able to build our programs in a very respectful manner.”
She also suggests that individuals living with HIV consider joining peer support groups, because, “A lot of newly diagnosed clients need extra support, and hearing from a peer advocate who they can trust, outside of a medical person telling them what to do, can be super helpful.”
Both Olayanju and Kostman emphasize how essential it is for people living with HIV to advocate for themselves by seeking assistance before a situation turns dire. When asked how to respond if one is met with skepticism, as I have been whenever I have asked for an extra month of medication, Kostman stressed, “Be persistent, be honest, and say, ‘I'm trying to think ahead here.’”
While acknowledging that patients should not have to deal with this doubt, Kostman also suggests that clients advocate for themselves by addressing the issue head on. “It puts a client in a difficult situation, but I do think it’s important to learn how to advocate for yourself and to feel comfortable enough if you’re not comfortable with the response to say, ‘Maybe I need to look for a different provider.’”
How Do You Advocate for Yourself?
Advocating for oneself when speaking to a medical professional can be intimidating even for people with training. Lynette Ford, M.S.W.—senior vice president of programs and prevention services at GMHC in New York City—encourages individuals living with HIV to find an advocate to champion their needs and to take on educating themselves. “The more you know, the better care you’re going to receive,” she says. “There’s nothing worse than feeling paralyzed by helplessness.”
When it comes to finding the information that one needs, she suggests joining advocacy groups, watching webinars, and asking questions of doctors. That said, Ford says, “Being your best self-advocate does not absolve the systems or staff that you are using from helping you get the services that you absolutely deserve.”
But what does one do when they “don’t know what they don’t know”? Ford says there has to be a starting point, and much like every other professional who spoke to me for this article, she says, “If someone feels uncomfortable about asking any provider or advocate a question, they need to find a new provider, because that’s not the provider for you.”
Just as we can ask as many questions as we please before we buy a car or a cake, Ford reminds readers, “You have rights as a consumer, and you should be able to ask as many questions as you feel the need to ask to make you feel comfortable, because this is about your life.” Even as she knows this, she also acknowledges how difficult speaking up for oneself can be.
When her son was five years old, Ford says that during a doctor’s visit, she noticed that a nurse was taking his blood incorrectly. She knew because she’d completed nursing school, but she says it still took her a minute to say something. “Try not to be afraid to speak up,” she says.
“You have a right to get competent, caring, non-judgmental care in any aspect of your life. I don’t care if you’re at Starbucks, you have to speak up, because if you don’t speak up, nothing will change. It took me a minute, but once I said something, she started doing it the correct way, because she knew that I knew.”
And if the person you are speaking to does not respect your comfort, Ford says, “Ask to speak to that person’s supervisor, because nine times out of 10, your life depends on it.” Rather than punishing that person, this provides that person the opportunity to get better, and that will impact the care of the person who comes after you in a positive way.
For Gordon-Smith, this means reaching out to every client with whom she has lost contact and empowering them with the knowledge that they can demand better and insist that their falling through cracks be listed as an unacceptable option. “I’m hoping to enlighten a lot of people and get them to start thinking that if this is a systemic issue, then what do we need to change, alter, break down, and redo in order to improve it?”
Suffice it to say, I am thinking about that right now. I’ll start with improving my situation by changing to a new health care provider and pharmacy. If you have experienced anything similar to what I have gone through with my provider, you should too. We deserve to be prioritized by people who have committed themselves to our care. Not only because they receive a great deal of money for processing us, but because we are precious and should never be made to feel that we are anything less than wonderful.
If you are in need of a new service provider, consider using the ASO/CBO National Directory to locate a provider near you. Remember that a provider’s job is to assist you—and if you don’t feel comfortable where you are, someone else will be thrilled to give you the care that you deserve.