Whose fear is it anyway? People with HIV and dentists

People with HIV are still failing to access good dental care, even though it’s in their interest. Do they assume dentists will still have issues treating them? And are they right? Gus Cairns reports.

A story of my own to start with. I started going to my local hospital dental clinic in the early 1990s after ringing up my dentist at the time anonymously. I said I was a patient of theirs and I had HIV; would they treat me? They said no.

Fifteen years later, however, NHS cuts meant that the dental hospital stopped sending me check-up reminders. A friend who has both HIV and hepatitis C mentioned he’d registered with a dentist nearly opposite my flat and that they had been fine with his medical status.

I duly registered and filled in a long form giving details of my medical history and current meds. When I turned up for my appointment I was met by a young dentist. I had the impression my HIV status made him a little nervous – he stumbled over the word ‘antiretrovirals’ - but he gave me a check-up and a good clean, warned I might be prone to gum disease because of my modest CD4 count (350), and told me my dental hygiene was pretty good. On the whole I was satisfied.   

I include this personal experience because it’s still far too untypical of what a large number of people in the HIV-positive community have experienced. A survey aired at this spring’s British HIV Association Conference¹ showed that people with HIV were much less likely to have seen a dentist recently than those HIV-negative people attending the same genito-urinary medicine (GUM) clinic.

Why was this? Were NHS dentists refusing to see patients and referring them to specialist dental services? Or were patients afraid to access dental treatment, assuming dentists will refuse to see them?

HIV and the mouth

What is clear is that people with HIV should see a dentist regularly. This is borne out by another statistic from the survey: in one in eight patients with HIV, but none of the negative ones, the last time they saw a dentist was because it was an emergency.

In pre-HAART days, oral HIV symptoms were one of the most characteristic first signs of AIDS – and of course still are in people diagnosed late. You can almost predict a person’s CD4 count by what is happening in their mouth, according to one study.² At CD4 counts below 150, oral thrush (candidiasis) and the similar-looking viral infection oral hairy leukoplakia (OHL) appear. Below 100, patients turn up with Kaposi’s sarcoma lesions and persistent mouth ulcers. Below 50, and they start getting gum disease so severe the gums die back and teeth fall out. Happily in the HIV treatment era, these manifestations of AIDS are rarer.

Some conditions that are more common in people with HIV have not got rarer, though; and dentists may be the best practitioners to pick up on these and spot signs of trouble. Last month we looked at human papilloma virus (HPV), for instance, and its role in cervical cancer. But oral HPV infections are also a lot more common in people with HIV.

Oral HPV-related warts may just feel like bumps inside the mouth, especially on the inner surface of the lips. But they may become obstructive and distressing, need repeated surgical removal, and become cancerous: HPV causes 20 to 25% of cases of oral cancer.  Oddly, oral warts have become more than twice as common in people with HIV since the introduction of antiretroviral drugs (ARVs) and people on ARVs are much more likely to have them than people who aren’t, for reasons that aren’t clear.³  A visit to the dentist, clearly, could result in a cancer, or cancer risk, being spotted that could be missed by your regular doctor.

Oral cancer is rare. But tooth decay isn’t and gum disease even less so. Neither is likely to kill you; but failing to visit the dentist can result in a lot of pain, loss of teeth, and, as much as a risk to health, become a risk to your self-esteem and social acceptability. Who wants to have bad breath or be scared to smile?

Tooth decay is more common in people with HIV, though not hugely so: a five-year-long study found that it developed 20% faster in women with HIV.4 What is a lot more common, is a condition called xerostomia, which simply means a dry mouth; the salivary glands produce less saliva than they should. This is a relatively common condition, and nearly three times as common in people with HIV: 4% of HIV-negative people have xerostomia but nearly 11% of positive people do.5 It’s 2.5 times more common in people with low CD4 counts versus those with high CD4s; but it’s also 2.5 times more common in people taking HIV therapy, and has been associated with drugs ranging from ddI in 19926 to protease inhibitors in 2009.7

This condition is really important because saliva has natural antibacterial agents in it – that’s why animals lick their wounds. It also contains substances that help remineralise the teeth. And the flow of saliva washes food particles and associated bacteria away from crevices where they do mischief. For whatever reason, people with xerostomia experience an often dramatic increase in tooth decay.

One major cause of xerostomia is ‘speedy’ recreational drugs such as methamphetamine, cocaine and ecstasy. Damage to teeth and gums - ‘meth mouth’ - is worsened by the fact that these drugs can cause clenching of the jaw and teeth-grinding. Carrying a bottle of water with you and use of sugar-free gum can help.

Whatever the cause, you can help with gum disease and tooth decay by regular and attentive teeth cleaning using a high fluoride toothpaste and flossing too. And where you can’t, it’s the job of the dentists and their indispensable assistant, the hygienist, to do it for you. Dentistry is as much about preventing gum disease and tooth decay as it is about treating it.

A positive dentist advises

‘Dr Steve’, a dentist from the home counties, thinks that patients and dentists should stop seeing HIV as a big issue that prevents proper dental treatment.

He should know. Steve is HIV-positive himself (hence the pseudonym).

“The principal dental problem in HIV-positive and -negative people alike is gum disease,” he says. “And the main cause of that is plaque.” Wiggling his fingers as if I was his patient and he was lecturing me in the chair, he shows how plaque – the soup of bacteria inside the mouth – gets into the crevice between tooth and gum. If it’s not cleaned off properly, two things happen.

Firstly, it starts eroding the gums. They recede – leaving teeth vulnerable to loosening and exposing softer parts of the tooth to decay. Erosion can also happen out of sight, in ‘periodontal pockets’ between the inside of the gum and the tooth root.

If that happens, these pockets can become infected and turn into abscesses. Even if they don’t, the bacteria inside can attack the tooth root, killing off the living nerve inside, and erode the bones of the jaw itself. “And that bone loss can’t be reversed,” says Dr Steve. “Without supporting bone, your teeth are like buildings without foundations and will fall out.”

If people cleaned and flossed properly, he says, they would rarely have to see dentists. “But you need to do it regularly and be shown how to do it properly, not just with a toothbrush but with floss and an interdental brush” (one of those tiny ones that cleans in between teeth). “I have four hygienists in my practice. In fact I should say that the first question you should ask of any private or NHS practice is: do you employ a hygienist? They’re the most important people.”

 “As you state, recreational drug use can be particularly damaging. It’s not a bad idea for patients to discuss this in absolute confidence with their dentist and hygienist so that they are able to make a clear differential diagnosis as to the causes of their damaged dental health.”

Diet, of course, is important, and we all know we should avoid eating sweets. “But the hidden sugar in items like ketchup is just as important,” Steve adds.

Access and prejudice

So what about the issue of access to dentists? Are patients mistaken in thinking they’ll be turned away?

The General Dental Council guidelines⁸ say: “The spread of HIV infection has served to highlight the precautions which a dentist should already have been taking [our italics]… It is unethical for a dentist to refuse to treat a patient solely on the grounds that the person has a blood borne virus or any other transmissible disease.”

Despite this,⁹ people with HIV are still reluctant to see dentists. Silvia Petretti of Positively Women says: “I have been training dentists on HIV awareness as part of an ‘Access to Mainstream Services’ project commissioned by Hammersmith and Fulham PCT [primary care trust]. According to a number of focus groups and a questionnaire distributed among positive women and men in the area, only 65% of people in the PCT were registered with a dentist, only 45% would tell their dentists about their HIV status, and 55% perceived their HIV status as preventing them accessing services.”

Patients’ experiences

We asked a sample of HTU readers about recent experiences with dentists.

Outright refusal of treatment was rare, but it did happen:

“When I moved to Devon I disclosed my HIV status. The dentist said ‘I am very sorry but we wouldn’t be able to treat you here because we don’t have the facilities.’ I asked if she’d mind ringing the PCT to find out what someone in my position should do. A few hours later she got her secretary to ring back and say that she was now willing to treat me.”

More often, there was a suspicion that the dentist was avoiding taking the patient:

“I work for an HIV organisation in the north of England, rang a dentist on behalf of a service user and was told that, yes, they were accepting new NHS patients. Less than half an hour later, after I had notified them that the service user was HIV positive, I was told that they were not accepting any new patients at present.”

Some dentists refuse on cost, rather than directly on safety grounds:

“I signed on as a private patient to a practice in London. The dentist said ‘It will cost you more because of the extra infection control equipment’. I thought, you’re talking rubbish, what you already do should be enough. So I went to another practice and they couldn’t have been nicer. The receptionist was charming and the dentist offered to do as much as he could on the NHS.”

It is unethical for a dentist to refuse to treat a patient solely on the grounds that the persona has a blood-borne virus. General Dental Council

In other cases people are perfectly happy and open with their dentists but still have an uneasy feeling that they are being treated differently:

“I disclosed my status to the dentist I already had on diagnosis. He is a very good dentist, supportive, interested and helpful...but...he still sees me only as the last patient of the day. I haven’t challenged him about it – I don’t want to lose him! But there is no reason I’m aware of that he needs to do this.”

In the patients HTU talked to, only ever being seen as the last patient of the day was the most frequent complaint, and it was the most common reason that patients gave for feeling, rightly or wrongly, that they were seen as a ‘problem’.

What do the dentists really think?

Do dentists really worry about taking on HIV-positive patients? Or are patients too ready to regard as discrimination normal practice and precautions?

One of the few studies that asked dentists what they really thought of patients with HIV was conducted in north-west England six years ago. It may therefore not be representative of views now, but it might explain some reactions.¹⁰

The researcher asked 15 dentists for detailed interviews, out of a group of 330 who had been part of a larger survey¹¹ on the same subject. Two-thirds of the dentists in the larger 330-subject survey had agreed with the statement that they had “an ethical responsibility to provide dental care to HIV-positive patients.”

However when the 15 practitioners were quizzed more closely, only seven of the 15 said that they would accept HIV-positive patients ‘without hesitation’. Of the others, five would ‘accept with some hesitation’ HIV-positive patients while three would refer them elsewhere.

Some practitioners had no reservations:

“If a person needs dental care and you’re able to provide treatment, then you are responsible to provide it, providing it doesn’t put you at risk, and I don’t see that HIV does that.”

Others were much more hesitant, however. Several stressed the “disproportionate time involvement” and this centred round the belief that they needed to take extra precautions. Two expressed rather contradictory attitudes towards infection control:

“Yes, routine infection control procedures should be sufficient but I would say extra precautions are needed such as double-gloving.”

A lot of the dentists mentioned the presumed extra expense in seeing a patient with HIV.

“Any patient that takes longer, and the same applies to a nervous patient, it means the patients are unprofitable to see.”

Some practitioners said they were concerned about the reactions of their staff:

“Even if you explain everything – HIV has such a psychological aura about it – if they genuinely do go home and have sleepless nights…you could potentially have tribunal concerns on your hands.”

Finally, one had been on an HIV awareness course which seemed to have a counterproductive effect:

“It changed my attitudes quite a lot, but if you had a needlestick injury, the drug regime you had to go on was horrendous – that scared me.”

How to get a dentist

Faced with attitudes such as these in both patients and practitioners, not to mention the general shortage of dentists willing to provide NHS care, one option is to contact your local Community Dental Service: clinics in which dentists who are receiving an NHS salary provide first-line service.

In Lothian, for instance, Dr Chris Cunningham, co-author of the BHIVA study,¹² works for the Salaried Primary Care Dental Service (the equivalent of a Community Dental Service).  

“We do still have a specialist care team for people with HIV. Edinburgh has always been different in that we’ve had quite a large population of people with HIV and also injecting drug users.

“Only a small minority of our patients have had problems getting a dentist specifically because they have HIV. A larger number can’t find an NHS dentist for the same reasons as anyone else – there aren’t enough of them. A proportion of patients want to disclose their HIV status to us and not to a high street dentist. And, finally, some think we will offer a better service.

“For a while we have only been accepting new referrals for people with CD4 counts less than 200 or with specific oral problems but as a result of our study we are reconsidering whether we should accept asymptomatic HIV-positive individuals. We’ll offer a course of treatment, get you dentally fit, and our advice is then to go and find a regular NHS dentist. If you get refused because of HIV you can take them to the General Dental Council.”

Dr Steve adds: “If they reject you because of HIV, or if the dentist insists on conditions such as double-gloving (such rubbish!) or your having to have the last appointment of the day, you have the winning hand, not the losing one: the General Dental Council Good Practice Standards are quite explicit and they could face a charge of professional misconduct. I hope, armed with this knowledge, HIV-positive dental patients who are feeling a little intimidated about going to the dentist may feel just that little bit more empowered.”

In other parts of the UK, however these services are seeing fewer patients with HIV as their reason for referral. A spokesman for the Lambeth, Southwark and Lewisham Community Dental Service, for instance, told HTU that “in contrast to the early 1990s, when I saw lots of people with HIV at the PCT dental clinic, now to get referred you’d need to have additional needs other than HIV: maybe a low CD4 count, complex dental problems, or issues such as mental health [problems]. Having said that, our criteria also include “people who may not otherwise seek or receive dental care”.

One option if you have difficulty in getting a dentist is not to disclose your HIV, of course. There is no legal obligation to do so, you’re unlikely to have HIV-specific complications with a reasonable CD4 count, and relatively few drugs used in dentistry have interactions with HIV medications (ones that do include sedatives for patients who have dental phobia and some antibiotics). However drug interactions do exist and you’re withholding medical information that might help your dentist make a diagnosis.

Another answer is to go private, but even Dr Steve (who only does private work) recommends that if you haven’t had dental care for a long time, it may be a good idea to seek out an NHS dentist first. If you’ve not been able to find a dentist in your immediate local area you could search for one at the NHS website at www.nhs.uk or contact NHS Direct on 0845 4647. Working with an NHS dentist should restore you to basic dental health and save you money. In Scotland, basic check-ups are free. Unless you are on certain benefits such as Income Support, in which case you get free treatment, NHS dentists in England and Wales will charge you one of three fees:

• £16.50 for a basic checkup, X-rays and cleaning

• £45.60 for drilling and anything up to 20 fillings

• £198.00 for crowns, inlays or anything outsourced such as dental lab work.

If you go private you may get a quicker service, or one that is closer to where you live, but it is likely to cost you a lot of money. Steve gives as typical private charges for an out-of-London clinic – London practices may cost a lot more:

• £80 for an initial consultation

• £150 for a complete check-up and comprehensive clean

• At least £460 for a crown

Another reason for going private or contacting your Community Dental Service might be dental phobia.

Even if you don’t have an extreme fear of people putting sharp metal objects in your mouth, Steve says, “It’s very important to establish a rapport. It’s a very intimate procedure. You might simply not like the dentists. Well, if you don’t, move on.”