As if trying to age gracefully with HIV -- at 63, I have lived with the virus for 29 years now -- weren't a sufficient challenge, I find myself facing a growing effort and cost to maintain the health of my teeth and gums. And there is good reason to put my money where my mouth is: Good oral health is integral to our overall health and well-being.
A case in point: At a recent visit to my doctor, we noticed that my PSA antigen, a marker for prostate health, had started to go up after being stable and within normal range for many years. Soon after, I went to the dentist for a routine examination and cleaning ($185). An initial X-ray ($23) revealed the need for a root canal ($1,000, ka-ching ka-ching!) on the upper right side and showed evidence of infection.
The root canal was one of the most painful experiences of my life. The residual pain lasted for days and I resorted to the prescription painkiller Percocet and cold compresses for relief. I was also put on antibiotics for the infection. I am happy to report that everything returned to normal after about two weeks.
Two months later when I asked my doctor to repeat the PSA antigen test, the results came back with my old numbers. The lesson for me? The mouth is connected to the butt in ways I never imagined. I had read somewhere that infections in the mouth could cause the PSA antigen marker to rise, and while my doctor was somewhat skeptical, he could not find another explanation for the return to normal levels.
Tooth Fairy, Where Are You?
Now, I must add here that I've been phenomenally fortunate in having a dentist who has cared for me since 1977. I was among his first patients diagnosed with HIV and he took it upon himself to study the new disease and learn techniques that would keep everyone safe. Unfortunately, this is not always the case: Although having HIV is not a reason to be denied dental care, some practitioners still refuse to treat people with HIV/AIDS (PHAs).
I dutifully returned to the dentist last week for a follow-up appointment. I am now the proud owner of a gold crown (another $1,200) -- and not the kind you wear on your head. All told, this dental adventure has cost me just over $2,400.
Like so many fellow PHAs, I have no dental insurance and have had to pay for these costs out of my own pocket. Any time I've looked into supplemental dental insurance, pre-existing condition clauses made it unaffordable. Yet I consider myself among the lucky ones. After all, even though I don't have insurance, I do have better income than the average PHA, thanks to private long-term disability insurance that I purchased before my diagnosis.
Many PHAs access their drugs and dental care through provincial or territorial social assistance or disability programs. These programs might allow you to get your teeth cleaned once a year and have a bad tooth pulled, but root canals and crowns? Forget it! Bridges and implants? I don't think so! The result is that many people in our community cannot afford to see a dentist or a hygienist -- and their health may be at risk because of it. (See "Open Wide" for a discussion of common dental issues for PHAs.)
Oral Health = Overall Health
After my dentist fitted me with my new crown, the hygienist began a new program to monitor my gum health over time because of the relationship between gum disease and heart disease. Results of the Scottish Health Survey have shown a link between tooth-brushing behaviour and cardiovascular disease. Researchers think that the lax dental practices that often result in poor gum health can foster buildup of bacteria and lead to low-level inflammation. This chronic low-level inflammation can increase your risk of cardiovascular disease. (See "Inflammation Information" in the Spring/Summer 2010 issue for more on HIV, inflammation and heart disease.)
Although it seems a no-brainer that good oral health is integral to our overall health, government officials often say there is no money to improve oral health care for those on social assistance. This should not stop us from advocating for the health-care system to improve coverage for medically necessary dental care, and as a community, we should have a say in defining what that means. Benefits and coverage for people on assistance programs need to be greatly expanded. In some cases, people would be able to return to work if their dental needs were met.
In the meantime, if you're looking for more affordable dental care, consider asking whether your dentist has a sliding fee structure for people on limited incomes. Also, some dental schools offer clinics with reduced fees. Finally, don't be afraid to discuss your dental health problems with your doctor. Some physicians may be able to treat infections or act as an advocate with a dentist they refer you to.
Finding a dentist who has experience with HIV and being open about your HIV status with him or her will help you get the best care. There are several oral conditions that are more common among PHAs and sometimes the first signs of advancing HIV disease appear in mouth.
Dry mouth, common among PHAs, can be caused by the virus, certain drugs and some foods and drinks. Saliva protects teeth and gums, and a dry mouth can lead to infections and decay in the teeth and gums. Canker sores (apthous ulcers) can also be an issue. These small round sores can be quite painful. Check out CATIE's Practical Guide to Nutrition for tips on how to deal with problems in the mouth or throat. If they persist, talk to your dentist or doctor.
Gum disease is inflammation of the gums. It can result in receding gums and loose teeth, which might even fall out. Smoking and dry mouth can make gum disease worse, and there is new evidence that the inflammation seen in gum disease can lead to increased risk of heart disease. Gum disease has also been linked to an increased risk of diabetes and perhaps to pre-term births. Good oral hygiene -- including regular brushing, flossing and visits to the dentist -- can keep gum disease from developing.
Infections in the mouth can be a sign that the immune system is being weakened by HIV. They sometimes lead to someone being tested and diagnosed with the virus. Thrush (or candidiasis), hairy leukoplakia and oral Kaposi's sarcoma are seen in advancing HIV disease. PHAs should also be on the lookout for other infections, including cold sores (herpes simplex), shingles (herpes zoster) and oral warts (human papillomavirus).
Ron Rosenes has lived with HIV for almost three decades and has worked tirelessly for access to proper health care for all PHAs during that time. He believes in the African proverb: The best time to plant a tree is 20 years ago. The second-best time is now.