August 2022 - North Carolina Oral Health Collaborative

An All-Too-Common Story of Need, Scarcity, and Oral Disease

Post author By Sydney Patterson
Post date August 17, 2022

She vividly remembers waking up with a swollen jaw, tooth pain that wouldn’t go away, and a sinking feeling as she realized what it meant.

Melinda Johnson of Hayesville, North Carolina, whose name has been changed to respect her privacy, does not have insurance of any kind, including dental insurance. Her children are currently on Medicaid.

Johnson usually begins panicking when she thinks about dental care. She knows that she does not have enough money to afford it, as she is already living paycheck to paycheck just to account for basic needs.

She said she usually must resort to the emergency room for dental care, where she is typically not treated kindly. In past experiences, staff thought she was seeking opioids instead of care for dental pain, so she always told them she’s not an addict so they would give her a fair chance.

Johnson says that there is an income-based dental clinic in Hayesville, but it doesn’t offer the kind of care that she needs, like multiple extractions, fillings, and implants. Most importantly, she needs multiple teeth removed so that decay doesn’t spread.

Searching for Care

Johnson vividly remembers a recent experience waking up with a swollen jaw and excruciating tooth pain that continuously got worse. Since she had no financial means to get the tooth pulled, she went to the emergency room and was prescribed an antibiotic for the infection and Toradol for pain.

After she finished the antibiotic, the pain subsided but swelling persisted. Her next step was to go see a regular doctor, who gave her higher dose shots of antibiotics. She has now finished those antibiotics, as well, but still does not have enough money to have the tooth fully treated.

Today, Johnson is still trying to find a dentist in her price range. She is looking for a dentist out-of-state while waiting on her paycheck.

Fear, Anxiety, and Shame

This experience has made Johnson feel self-conscious and embarrassed. Her feelings about it are so strong that she can’t speak about it without crying.

She admits that drugs, which are a huge issue in rural North Carolina, are a factor contributing to her dental issues. According to the Western North Carolina Health Network, 50.5 percent of adults in Clay County, where Hayesville is located, have been negatively affected by substance use.

According to Johnson, pregnancy was also very hard on her teeth. Hormone changes and morning sickness that result from pregnancy, for example, can negatively impact oral health. She recounts that she did not have a single cavity until her first child, and then after her second and third children it was as if her teeth were just breaking off one by one.

Impossible Choices

Johnson said that she doesn’t understand why dental care is so expensive and inaccessible. She said that she is trying to get her life back together and doesn’t want to have to beg for money “because of her poor choices.” She isn’t looking for a “free ride” by any means; she just doesn’t want to have to choose between “feeding her family and getting a tooth pulled.”

For Johnson and too many others in North Carolina and across the United States, this story is a daily reality. Oral health issues that for many are nothing more than a minor annoyance (perhaps an extra dental appointment and a filling away from a full resolution) disrupt the daily lives of those who can’t afford the care they deserve, deteriorating and developing into major health concerns.

NCOHC, a program of the Foundation for Health Leadership & Innovation, works to advance systems-level changes, improving the overall health and well-being of all North Carolinians by increasing access and equity in care. To stay up-to-date and get involved, join us today as a North Carolinian for Change.

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An Oral (Health) History of the HIV Epidemic

Post author By NC Oral Health Collaborative
Post date August 3, 2022

“It just kept happening, over and over and over again. Patients of record, patients I’d known for years. Either they come in complaining about something or I see something. All of the classic oral manifestations of HIV disease, there they were.”

Dr. Lewis Lampiris is a retired dentist and educator. Over the course of his career, he:

Served as a dentist in the U.S. Army
Owned and operated a private practice
Served as the president of the Association of State and Territorial Dental Directors
Served as the director of the American Dental Association’s Council on Access, Prevention, and Interprofessional Relations
Served as the chief of the Illinois Department of Public Health Division of Oral Health
Retired as associate dean for community engagement and outreach at the UNC Adams School of Dentistry.

Lampiris is also a gay man, and he was early in his career practicing dentistry in downtown Chicago when the HIV epidemic hit. Here, in his own words, is Lampiris’ story about the years that followed:

“People like to go to providers who look like them or sound like them or understand who they are. So, I as a gay man ended up having quite a few LGBTQ patients in my practice, mostly other gay men.”

June 1981: The U.S. Centers for Disease Control and Prevention (CDC) published an article outlining five cases of a rare lung infection in young gay men, the first cases of what would become known as AIDS.

On the same day, a New York dermatologist reported multiple cases of Kaposi’s sarcoma, a rare form of cancer. These cases would later be linked to AIDS.

It wouldn’t be until 1984, three years later, that scientists would discover the cause of AIDS: a virus that would be named HIV.

“Anyway, around 1985 I got a call from a physician who was a patient of mine. He was a resident at Northwestern. He comes into my office, and I had never seen it before. I had only read about it. He had a Kaposi’s sarcoma lesion, no question about it.”

That man was Lampiris’ first HIV-positive patient. His case and its oral manifestations would play a large role in re-orienting Lampiris’ career toward providing care for HIV-positive individuals and educating other dental professionals to do the same.

“I felt an obligation to take care of my patients and there was so much hysteria about HIV at that time, both in the general public as well as among the dental community. I was one of the few dentists in Chicago who would get referrals for patients with HIV from the Chicago Dental Society. There were only three of us in the beginning.”

1985: More people were diagnosed with AIDS than in all earlier years of the epidemic combined, according to the CDC.

In 1985, 51 percent of adults and 59 percent of children with AIDS died from the disease.

“And as a dentist I feel responsible for taking care of everybody who walks through that door, regardless of who they are, what they look like, what kind of condition they are in. It’s an obligation to take care of people. That comes part and parcel with your degree as a dentist, as a physician.”

Lampiris saw a moral imperative when it came to providing care for HIV-positive individuals. But in many ways, his work was also driven by societal disregard for the wellbeing of LGBTQ people. He went on to discuss just how alone his community was as this new disease spread.

“In my opinion, and I think there’s a lot of evidence to support it, we really were undesirables. We were a stigmatized population. Reagan was president during that whole period of time, and he wouldn’t mention the word ‘AIDS.’ We had to take care of ourselves.”

“I remember marching in gay pride parades giving out brochures about oral sex and HIV disease transmission. Somebody had to talk about it. So, we had to educate folks, and we had to do it ourselves.”

March 12, 1987: Gay rights activist and playwright Larry Kramer founded ACT UP (the AIDS Coalition to Unleash Power) in New York City.

“I was a member of Act Up. Dr. Fauci was the director of the National Institute of Allergy and Infectious Diseases at that time. We were demonstrating. We were in front of him arguing about clinical trials – that they needed to be opened up right away.”

Lampiris paused here to mention the similarities and differences he sees between the HIV epidemic and COVID-19. Where trials were fast-tracked and the full weight of the scientific community was thrown behind finding vaccines for COVID-19, activists had to fight to secure federal funding and research for HIV treatment.

“Then after my own personal tragedy, where my own husband, my partner, died of AIDS in 1991, I needed to change my direction. Shortly thereafter I ended up selling my practice and going to get my master’s in public health degree from the University of Illinois in Chicago.”

1992: AIDS became the #1 cause of death for men in the U.S. ages 25 – 44.

1994: AIDS became the leading cause of death for all Americans ages 25 – 44.

Image taken from the movie Philadelphia (1993), the first major Hollywood film about AIDS.

“I ended up becoming the dental director for the Midwest AIDS Training and Education Center while I was in school, because they were affiliated with the university. I traveled around Wisconsin, Illinois, Indiana, Iowa, Michigan, giving talks about the oral manifestations of HIV disease, managing HIV disease in your practice.”

On his new trajectory, Lampiris set out to educate his peers in the dental community, preparing others to understand the oral manifestations of HIV and treat their patients accordingly. It wasn’t easy, however. HIV/AIDS would continue to be stigmatized for some time – the disease still results in discrimination today – and many members of the dental community would prove reluctant to provide care to HIV-positive people.

“There was a lot of hostility that came at me. I had a lot of teaching to do. But people showed up because they knew they needed to understand. There were dentists out there who were also treating HIV-positive patients in their practices, and they had no community – they had no place to go to learn. They would come to my lectures, so we said, ‘OK let’s set up a study group, so if you have something you see in your practice, we can all learn from each other.’”

1996: The U.S. Food and Drug Administration (FDA) approved the first HIV home testing kit.

1996: Scientists discovered a combination of HIV medicines that effectively suppress the virus’ spread.

1996: The first decline in AIDS diagnoses since the beginning of the epidemic is recorded.

Fast forward to today and HIV is a much more manageable disease. Most HIV-positive people in parts of the world with access to health care services can live full, vibrant lives. Parallel to advances in HIV treatment, Lampiris also saw positive changes in dentistry driven in part by the HIV epidemic.

“Absolutely HIV had something to do with universal precautions or standard precautions. Masking was not a standard protocol when I trained as a dentist. The CDC came out with precautions for infection control in the dental practice and they were adopted by the American Dental Association. That became the standard of care, and that emerged from the epidemic.”

2017: The CDC reported that U.S. HIV-related deaths fell by half between 2010 and 2017, largely due to early testing and diagnosis.

2022: Researchers announced that a woman’s HIV had been cured thanks to a new treatment approach. This new treatment is the first with potential for more widespread use.

“Going back to that first patient with Kaposi’s sarcoma, he was a patient of record. I’m responsible for taking care of everybody who walks through that door. The idea in terms of one of the basic ethical principles in our code of ethics is, ‘Justice, to treat everybody fairly.’ So that’s what I said back then but I’ll say it again. That translates to what we’re dealing with here in North Carolina with Medicaid patients, with the IDD community. There are similarities in treating folks that don’t fit into the mold.”

Just before this story was published, two new cases of individuals potentially cured of HIV were announced at the 2022 International AIDS Conference in Montreal. One case is of an 88-year-old man who was first diagnosed with HIV in 1988. After a stem cell transplant, he has been apparently cured of both HIV and leukemia.

In the other case, a woman who received an immune-boosting regimen in 2006 has been in what researchers characterize as “viral remission” ever since. In this case, the woman still harbors the HIV virus, but her immune system has been able to control its replication.

Researchers emphasized that both of these cases are not options for widespread treatment of HIV. Stem cell transplants are highly toxic and potentially fatal, and as such are typically not used unless a patient is facing a fatal and otherwise untreatable cancer. The immune system-boosting approach has not been widely researched, so much more needs to be done before it would be considered to be a replicable cure.