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London pharmacist Azza Elnusairi is believed to be the world’s
first pharmacist to specialise in a rare human retrovirus. Human t-lymphotropic
virus type 1 (HTLV-1) is transmitted via blood, unprotected sexual intercourse
and breast milk (see Panel). In a small proportion of those infected,
it can lead to debilitating muscle weakness called HTLV-1 associated
myelopathy (HAM) or adult t-cell leukaemia/lymphoma (ATLL).
What is HTLV-1?
Human t-lymphotropic virus type 1 (HTLV-1) is a retrovirus that is
transmitted via blood, unprotected sexual intercourse and breast
milk. Worldwide, the virus affects 10 to 20 million people. It
was only identified in 1985 but it is an old virus, thought to
have migrated in ancient times from indigenous people in North
and South America, Australia, Japan and Melanesia, and, more recently,
into southern Africa, the Caribbean and East Asia.
It is estimated that around 22,000 people carry the virus in the
UK, but most of these have no symptoms and fewer than 1,000 know
they are carriers.
For 5 per cent of carriers, infection can lead to two conditions — a
debilitating muscle weakness in the lower limbs called HTLV-1 associated
myelopathy (HAM) or a blood cancer called adult t-cell leukaemia/lymphoma
(ATLL).
People with HAM experience inflammation of the spinal cord
that can cause a number of symptoms, including severe neuropathic
pain, urinary
incontinence, constipation, erectile dysfunction, and stiff and unsteady
lower limbs, that often result in disability. Treatment is symptomatic
but research into antiviral therapy is ongoing. Those who develop
ATLL are often treated with chemotherapy although some specific treatment
with antiviral drugs has been shown to improve outcomes.
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Although only around 12 people a year in the UK are diagnosed with HAM
and about 20 with ATLL, cases are rising, in part because the National
Blood Service started screening all donated blood for the virus in 2002.
Greater movement of people between the UK and countries in East Asia,
Western Africa, South America and the Caribbean, where the virus is more
prevalent, is also contributing to increasing patient numbers.
It is against this background that Mrs Elnusairi was appointed earlier
this year as HTLV-1 specialist pharmacist at the National Centre for
Human Retrovirology, based at Imperial College Healthcare NHS Trust in
London. The centre opened in 2004 and is funded by the Department of
Health’s national commissioning group — it is the national
referral centre for HTLV-1.
The centre is set to expand and there are plans to recruit a consultant
and a research fellow registrar to join the current team, which includes
a consultant physician, a clinical nurse specialist and a neurophysiotherapist
in addition to Mrs Elnusairi.
Graham Taylor, the centre’s lead consultant for HTLV-1, says that
he was keen to recruit a specialist pharmacist to the team since polypharmacy
is a real problem in this group of patients. He adds that the centre’s
focus on clinical trials requires dedicated pharmacist input.
It was the challenge of developing a new post and working as an integral
member of a health care team that attracted Mrs Elnusairi to the post. “When
I saw the job advertised I thought it sounded fascinating. I had experience
of developing new posts before and always found that really challenging
and enjoyable,” she says.
Although Mrs Elnusairi had no previous knowledge of HTLV-1, she had some
experience of neurology from her role as principal pharmacist for medical
specialties at St Mary’s Hospital in London, and has always been
interested in immunology and infectious diseases. “I was also excited
to be working in a clinic and to be integral to a clinical team,” she
adds.
Clinics are held at the centre three times a week, with one clinic being
dedicated to people participating in clinical trials. Mrs Elnusairi’s
role mainly involves helping patients to manage the symptoms of HAM. “The
complex range of symptoms, combined with the fact that many sufferers
are older people and are often taking over-the-counter or alternative
medicines in addition to their prescription, creates a cocktail of triggers
for poor compliance and unpleasant side effects,” she explains.
Patients can be referred to Mrs Elnusairi by any member of the team and
she can also arrange her own appointments. Many HTLV-1 patients are taking
lots of medicines and Mrs Elnusairi carries out medication reviews both
face-to-face and via notes review. “Most of the patients who come
to us have tried many treatments before so I spend a lot of time trying
to gain an accurate drug history. Often I will find that they have tried
medicines for spasticity and pain relief at suboptimal doses in the past.”
Mrs Elnusairi also conducts telephone consultations to monitor compliance
with pain relief medicines. “I contact several patients once or
twice a week, carry out pain scores and adjust their medicines according
to response and side effects,” she explains.
Improving access to medicines is another part of Mrs Elnusairi’s
role. “Because we are the national referral centre, patients often
travel long distances, with many relying on hospital transport because
of their disabilities. So I have tried to speed up the dispensing process
so they do not have to wait for their medicines.” She also liaises
with patients’ GPs and community pharmacists to pass on any recommendations
from her medication reviews and to ensure continuity of supply.
The centre has an expanding research programme, which focuses on evaluating
existing therapies to see if they bring down patients’ viral loads
or reduce the symptoms of HAM by decreasing spinal cord inflammation.
Most of the trials involve using licensed drugs, such as immunosuppressants
and antiepileptics, off label. Antiretrovirals have been studied in the
past without much success. Ciclosporin is currently being investigated
and there are plans to study infliximab and sodium valproate in the future,
says Mrs Elnusairi. She currently helps to write clinical trial applications,
develops patient information leaflets, reviews trial protocols, and monitors
adherence.
Looking to the future, Mrs Elnusairi believes that there is great potential
to develop pharmacist prescribing within the clinic. She also hopes to
carry out medication reviews in patients’ homes, especially for
those with severe mobility problems. Providing more pharmacy input into
the research programme is also on her agenda.
“It is a steep learning curve, but it’s very interesting working
in one of a handful of clinics worldwide that specialise in HTLV-1 conditions
and there is great scope for a pharmacist to play a key role in furthering
the treatment and care of patients with this very disabling form of myelopathy,” she
says. |
The
Pharmaceutical Journal