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 Re: يا فخرنا سودانية اخرى....تعيّن أول خبيرة في برنامج بريطاني لمكافحة فيروس خطير (توجد صورة) (Re: بكرى ابوبكر)
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http://www.pjonline.com/editorial/20071020/news/news_htlv.html
HTLV specialist pharmacist appointed
A pharmacist in London may well be the first in the world to specialise in the management of a rare viral infection that can cause debilitating myelopathy. Dawn Connelly finds out about the virus and what the specialist role involves
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.
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.
http://www.pjonline.com/editorial/20071020/news/news_htlv.html
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Mohamed Omer
فيس بوك
تويتر
انستقرام
يوتيوب
بنتيريست