British HIV Association chair Dr Margaret Johnson tells
Martin Flynn how doctors are preparing to fight their corner on HIV treatments
Dr Margaret Johnson seems to have it all. Not only is she charming and elegant
but she is now arguably the top HIV doctor in Britain.
Raised by parents who were GPs in Wigan, Johnson trained at London’s
Royal Free Hospital where, at the start of the UK epidemic, she set up the
Ian Charleston Centre, now one of the most successful units in the country.
“My interest was in patients who were immune compromised,” she
explains: “The Royal Free didn’t have any HIV service so I set
one up. We wanted a stand-alone HIV service at the heart of the hospital rather
than hidden away in an annexe.
“I had no office, no doctors and no patients. The number of doctors
going into training at that time was tightly controlled so I had to create
my own team.
“We now have over 1,200 patients with HIV and share an in-patient ward
with the infectious diseases team. That has raised awareness around HIV infection
if patients present with pneumonia, TB or hepatitis.”
Ready to fight over choice of drugs
The hot issue in HIV this year is money; the high cost of treatments and the
future of services. With record numbers of new diagnoses and record numbers
of people living with the virus in the UK, can clinics cope?
“Our HIV patient numbers are growing at about 15 per cent a year. About
70 per cent are on medication and most are from north west London. Those who
come to us from afar do not have good HIV services near where they live.
“We get patients with multi-drug resistance. Because of our expertise
in research and clinical trials we can also give specialist advice on what
would be the best next combination regimen to go on.
“I’ve never been unable to prescribe what I want for my patients.
I would not take no for an answer. If the evidence is there I would find it
incomprehensible that it would not be funded.
“We clearly have financial responsibilities and have to be rational
about what we prescribe. But given how amazingly well HIV drugs work, I can’t
imagine they won’t be funded in the future.
“If there are two drugs which are equivalent, cost is obviously one
of the issues. But we are coping and I hope we’ll continue to cope.
“We moved from ring-fenced money in HIV to ear-marked money, and now
to money in the general NHS pot competing with all the specialist areas. It’s
very tough.
“We have to fight our corner. We have to show our increased number of
cases, the effectiveness of treatment and that people on antiretrovirals are
not getting sick or dying in hospital and many are going back to work, being
productive members of society and paying taxes.
“We
should be very proud of HIV services in this country. It really is a success
story. Look at cancer services; we hear Britain is right down at the bottom
of the European league table.
“Look at our treatment outcomes. More than 80 per cent of our patients
now have an undetectable viral load - much better than in the US or Europe
and that isn’t the case in other diseases.”
Other treatments
But will people with HIV still be able to get treatments apart from ARVs?
“I don’t think New-Fill (to replace fat loss) will be cut. It
is already limited to a small number of patients in each clinic and there
is waiting list. The protocol has been to use it only in the cheeks but we
argue that some patients also have fat wasting around the temples which can
also be upsetting and stigmatising.
“There is an accumulation of evidence that D4T is linked with lipodystrophy.
The RAVE study [see treatment news, Page 32] showed the majority of patients
with lipodystrophy were on D4T or AZT and that switching to abacavir or tenofovir
results in fat being put back on. Moving away from a thymidine analogue drug
like AZT or D4T is associated with fat return.
“But it is only a small amount of fat and can take a long time to reverse.
Maybe we should be trying to prevent facial wasting and lipodystrophy rather
than trying to reverse it afterwards.”
Should there be routine testing?
“When I started my job, the people with HIV we saw were coming into
casualty already very ill with things like PCP (a severe form of pneumonia).
We quickly realised it was better to offer a service so local people would
come and get tested before they were ill. So we tried to concentrate on early
diagnosis.
“I think HIV testing should be seen exactly the same as any other blood
test. Some might have a problem with having an HIV test without knowing about
it in advance. But medicine’s moved on and I think we should be saying:
‘We are going to do some tests and these are what they are, is that
alright?’.”
Meeting specific needs of women and men
You must see a lot of women with HIV now. Do you treat them separately?
“We’ve had a women’s clinic since the early 1990s and we
also have a paediatric clinic. In the women’s clinic it’s about
her, and in the paediatric clinic it’s about the child.
“We have a team of gynaecologists for screenings and treatments for
pre-cancerous conditions which are more common in HIV positive women. So they
can have their screening tests while seeing their HIV clinician. If they’re
pregnant they can see the midwife. Or they can talk to the gynaecologist about
pre-pregnancy advice and counselling.
“Our antenatal testing and treatment programme is a great success. We
haven’t had an HIV positive baby in the last seven years apart from
someone who wouldn’t take ARVs.
“We encourage all patients to have regular GU screening and we do checks
for hepatitis and syphilis annually. Gay men with HIV may be at a greater
risk of anal cancers and I think there should be a national screening programme
just as there is for cervical and breast cancer in women.”
Defending patient care
What is BHIVA, who belongs to it and what does it do?
“The British HIV Association is an organisation of HIV doctors and specialists
from across the country. It has been going for over 10 years and now has over
900 members.
“BHIVA is about getting the highest possible standard of treatment for
our patients. Therefore our core activities are about guidelines, standards
and training.
“The new BHIVA treatment guidelines (to be published at the April conference
in Dublin) will say that the cost of the drugs is a consideration but only
if you’re comparing two drugs that are equivalent. We have to look at
the evidence. BHIVA won’t come up with any strict protocol restricting
HIV drugs because of cost. The guidelines are about evidence and saying what
are the preferred options. Price is only an issue when two treatments are
equally effective.
“Our first guidelines were back in 1992 and I think we’ve made
a big difference. In many specialist areas only about 25 per cent of clinicians
participate, but the BHIVA audit covers the vast majority of HIV patients
in the UK. And it’s reassured us that, almost across the board, patients
are getting excellent treatment and care.”
Helping patients cope
“Our whole team, doctors, researchers, nurses and pharmacists, is important.
We talk to the patient about how to take the tablets, what possible side-effects
there might be. I will never put patients on treatments when I first meet
them. I’ll usually introduce them to one of our research team to talk
about what are standard treatments and what studies we’re doing. Now
the key issue is finding drugs that are going to be more tolerable. So the
new patient meets up with the nurse and then we come up with which regimen.
Our pharmacists go through the timing and dosage of tablets and how to store
them.
“About 25 per cent of our patients starting on therapy go onto a trial
and 75 per cent go onto open label therapy.
“I think we already have expert patients in HIV. It makes a huge difference
in the management of an acute medical problem if the patient understands what
is going on. It’s fantastic when patients have read up and thought about
treatments for themselves. I really welcome the patient’s perspective.
I always think what I’d do if I was in that position.”
What’s best for first-line therapy?
Half of your patients are said to be on protease inhibitors (PIs) as part
of first line therapy. Is this the norm now?
“All the guidelines will say: either two nucleosides and a non-nucleoside,
or two nucs and a PI. Some colleagues at this clinic favour PIs as first line.
But you’ve got to choose the best combination for each individual. We’re
now seeing about 13 per cent primary resistance to nucleoside and non-nucleosides
in our clinic population. I have concerns about the strength of a combination
nucleoside backbone and every patient gets a resistance test before starting
therapy. But the outcomes of PIs versus NNRTIs are pretty equal.
“Many people are used to twice-a-day therapies and have fitted them
around eating times. I don’t think there is any literature that says
you get better outcomes in any disease on once-a-day therapy. Obviously all
the drug companies with a once-a-day pill will want to tell you something
different.”
What new drugs are in the pipeline?
“Not much to be honest. The most interesting is TMC114, a new PI from
Tibotec, which shows good results in patients with multiple drug resistance.
Fifty-seven per cent of patients had less than 50 copies at 24 weeks, which
is very promising. There are also some interesting CCR5 blockers going into
clinical trials. But we need to see the results in naïve patients and
those with advanced disease. If the data is good then we will then move very
quickly.”
Aspirations
And what do you see as the future for HIV services in this country?
“We have to keep them as good as they are. There is the pressure of
patient numbers and of money on all services. If they’re not supported
then standards will fall. As clinicians we need to engage with the health
commissioners, show that we’re being efficient and that we’re
doing our best with the money.
“We need to highlight just how well the HIV treatments work and therefore
how cost-effective they are in terms of getting patients back to work and
leading normal lives. With many other medical problems that’s simply
not the case.
“There is a very good chance people with HIV will now die from something
else. The thing I say to patients is ‘You must have the same aspirations
as if you didn’t have HIV’. I was always so impressed that even
when we didn’t have good treatments people with HIV would still do fantastic
things with their lives. More than ever I think HIV positive people need to
plan for the future like everyone else.
“Seeing people rebuilding their lives, women having healthy children,
men and women having good careers despite living with HIV is inspiring. So,
if you smoke, stop ASAP and save for your old age because you might well have
one.
“For me it’s been a real privilege to work in HIV with many brilliant
and dedicated colleagues. And I even enjoy my relationship with my patients.”
• For new BHIVA Treatment Guidelines, visit www.bhiva.org
