HIV Teenagers to Adults
posted: 21/02/2011
Older teenagers with HIV are our HIV pioneers because they are the first generation of young people growing up with HIV. Being the first at anything is often exciting, but with HIV it can be much less fun and more of a struggle.
Making the change better
The Children and Young People HIV Network are working to make it easier to move from being a teenager with HIV to being an adult with HIV.
Young people with HIV have two main challenges
- growing up from a child to adult with HIV (e.g. beginnning sex and relationships with HIV)
- moving from children's HIV clinic and education, into adult HIV services and employment or claiming benefits with HIV.
The Children and Young People’s HIV Network have now finished checking all the expert articles and books about changing from child to adult with HIV in a ‘literature review’.
They looked to learn lessons about improving the change from child to adult, including learning from experience with other conditions like diabetes and epilespy.
The HIV child to adult change literature review is here
The review
- has statistics about young people with HIV in the UK
- finds existing policies and guidelines for the child to adult change
- looks for useful lessons from other longterm conditions, like diabetes
- considers the needs of carers and family
- considers rural areas with very low numbers of young people with HIV.
Professionals tell us
Last week we pointed out the useful article where HIV health workers describe helping teenagers to make the change from child to adult with HIV, which is in the 200th issue of HIVTreatment Update.
Teens talking life with HIV
Two young people making these changes talk about their own lives. JD Bailey (20, female) talks about growing up with HIV, and Max, (19, male) talks about telling others about HIV
‘Transition of care from a paediatric to adult setting is not specific to HIV … However there are important differences … with HIV which may make this process more difficult’ Lyall, 2007.
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About 1 in 10 have Hepatitis C
posted: 15/02/2011
9% of people living with HIV in the UK also have hepatitis C, the Journal of Viral Hepatitis tells us, which is low compared with other countries. “In comparison with other large cohort studies, the overall HCV [hepatitis C virus] prevalence of 8.9% in the UK…is low,” comment the investigators.
9% means there are about 6,000 people who are diagnosed with both HIV and hepatitis C in the UK.
But 13,000 more people with HIV still haven't been checked for hepatitis C.
George House Trust analysis suggests that the true UK rate of hepatitis C among people with HIV is probably 11%, not 9%.
As a result, 2% of UK HIV clinic patients receive substandard care - we estimate there are around 1300 people with hepatitis C that is ignored by their HIV clinic, simply because the clinic hasn't checked for it, despite guidance advising hepatitis C checks since 2004.
Are you curious why the hepatitis C rate is lower in the UK among people with HIV? Here, most drug injectors (the main group of people who get hepatitis C) do not have HIV.
Early in the epidemic, England did the right thing, by introducing harm reduction for injecting drug users - like providing clean needles and syringes to reduce onward HIV transmissions.
Countries which delayed doing this have higher rates of HIV now among injecting drug users. We are sorry to say that Scotland is one of the countries with higher rates of hepatitis C among people with HIV.
1 in 10, or even 1 in 9?
The level of hepatitis C must be above 9%, because about 20% of UK people with HIV have never been tested for hepatitis C, despite clear UK guidance to test everyone with HIV for this once a year.
The 20% of people untested for hepatitis C by clinics would, if tested, probably add another 2% to the total, meaning the actual rate of hepatitis C among the UK HIV+ population is about 11%.
Liver disease harm means hepatitis C matters
Liver disease caused by hepatitis C is a major cause of illness and death among people with HIV. What was uncertain was
- how common hepatitis C is among people with HIV in the UK now,
- whether people were being checked every year for hepatitis C following the guidelines, and
- how well treatment works when people have both HIV and hepatitis C.
So, the study used anonymous information about 31,765 people using ten HIV clinics between 1996 and 2007, from the UK Collaborative HIV Cohort (UK CHIC).
1 in 5 seen at HIV clinics in 2007 were untested
The proportion of patients screened for the virus increased from 9% in 1996 to 80% in 2007.
“There has been a clear instruction that all HIV-positive patients should be screened since at least 2004,” write the investigators. Nevertheless, “20% of patients under follow-up in 2007 had not apparently ever been tested. The latest BHIVA [British HIV Association] guidelines recommend screening all HIV-positive patients at diagnosis, with annual repeat testing in those who are negative.”
Although injecting drug use (IDU) is very closely linked with having hepatitis C, only half (50%) the people with a history of injecting drug use were known to have had a hepatitis C test.
Gay men with HIV were most likely to have had a hepatitis C test (74%), followed by heterosexual men and women (63%), then IDU (50%). The investigators think more drug injectors have been tested than the 50% they found, perhaps at services for drug users.
George House Trust commentary
In 2009, 65,319 HIV-infected individuals (of all ages) were seen for HIV care in the UK, so the 2% who clinics are not treating for hepatitis C means about 1300 people are being neglected with worryingly substandard care.
- Clinics admit they don't know the hepatitis C status of half the people with HIV infected through injecting drug use. From this study we know that 84% are very likely to have hepatitis C.
- Clinics don't know the hepatitis C status of 26% of gay men, the next most at risk group. We know from this study that 7% of these men probably have hepatitis C.
The failure to screen 20% of HIV clinic patients for hepatitis C harms people's health and can seriously shorten life. Hepatitis C causes permanent liver damage.
Anyone with hepatitis C and HIV needs careful health monitoring for both conditions and the coordination of treatment and care.
This isn't happening for half the people infected through IDU and about one third of gay men, the other main group at risk.
The 9% of people with HIV in the UK this study found to have hepatitis C, compares with just 0.44% among the general UK population.
Hepatitis C and how people got HIV
The rate of hepatitis C varies with how people got infected with HIV. 84% of the people who got HIV as an injecting drug user have hepatitis C, and the next largest group is gay men – but just 7% of HIV positive gay men also have hepatitis C.
Gay men injecting more?
However, the investigators suggest that some hepatitis C infections in gay men may be due to injecting drug use, which is “underreported by some MSM [men who have sex with men], sufficient to place them at risk of HCV infection … underreporting of IDU as a risk for HCV transmission in MSM may also affect other cohorts.”
Unsurprisingly (when most gay men in the UK are white and most injecting users are also white and male), most people with both HIV and hepatitis C are men (80%), white (82%), with the median age at 37.
Treatment working
4% of the 10,000 patients starting HIV treatment after 2000 also had hepatitis C. Overall, 91% reached an undetectable viral load, which is as good as for people with only HIV.
Ask for hepatitis test when your next bloods are taken
Jason Warriner, clinical director of Terrence Higgins Trust said: “It’s concerning that almost 13,000 people living with HIV could have Hepatitis C without knowing it because they haven’t been routinely checked for the infection.
It’s not just people who use drugs intravenously who’re at risk of Hepatitis C, the infection can also be passed on during sex, so we’re encouraging anyone who is HIV positive and hasn’t been tested for Hepatitis C to ask their health practitioner for a check the next time they’re getting their routine blood tests.”
More information on hepatitis C and HIV
Reducing the risk of getting hepatitis C
People injecting drugs can protect themselves and others from hepatitis C by using drugs more safely.
Gay men’s risk of getting hepatitis C sexually seems to come from unprotected anal sex, group sex, drug use and fisting. Sharing sex toys and lubricants also appear to be risky. Using condoms for anal sex, and gloves for fisting provide protection. Information on risk reduction for gay men.
Source with reference and weblink
further material : demand screening
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Step To HIV Patent Pool
posted: 11/02/2011
The determined people campaigning for a patent pool to make HIV drugs available cheaply in developing countries are slowly getting results.
Unitaid works to improve access to medicines in developing countries and has set up the Geneva-based Medicines Patent Pool .
Sharing the patents of HIV drugs provides people in the developing world with cheap copies (‘generic’ versions of the drugs, rather than expensive brand name originals). Generic drug manufacturers in countries like India and China can then make legal cheap combinations of some of today's advanced HIV medicines.
2nd line generic treatments needed now
The world needs cheap combinations of new generic drugs to keep healthy and well the millions of people already talking treatments in the developing world, as HIV inevitably develops resistance to the basic drugs already being used.
Even GSK are now negotiating
But today, two months after sending out letters inviting the major makers of HIV drugs to add their patents on HIV drugs to the patent pool, it was announced that F. Hoffman-La Roche, Gilead Sciences, Sequoia Pharmaceuticals, and ViiV Healthcare (a joint venture of GlaxoSmithKline and Pfizer) are about to start talking business.
The big surprise is Viiv Healthcare. GSK has always said it wasn't uninterested in pooling HIV patents. Its chief executive Andrew Witty, said they would do something else instead.
Viiv Healthcare has however now taken the first step by saying it is interested in joining the negotiations.
The Medicines Patent Pool has published the responses to the HIV drug patent pool invitation from all the companies, naming and shaming the less than enthusiastic companies with their own letters. They’ll update this every quarter. It will be worth watching to keep drug companies accountable to people with HIV.
Source
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LifePlus - Web HIV Support
posted: 07/02/2011
Life Plus is a new website that hopes to transform how people live with and manage HIV for life. Life Plus is a fresh set of online, face to face and telephone personalised support tools for people living with HIV in the UK.
It’s been created by the Elton John AIDS Foundation (EJAF), Terrence Higgins Trust (THT), people with HIV, along with input from George House Trust and National Aids Manual.
There are around 86,500 people now living with HIV in the UK, and around 7,000 more are diagnosed every year. Life Plus should help take some of the pressure off HIV clinics by offering people with HIV support for living more independently, and longer and healthier lives, while HIV clinics focus help on the people who most need this.
Life Plus aims to support existing NHS HIV clinic care with face to face support, in the parts of the UK with the highest rates of HIV – Manchester, Brighton, Birmingham, Glasgow, and Cardiff. In each of these cities clinic-based health trainers will provide one-to-one support so people can become experts in all aspects of managing and living well with HIV.
The new website, myhiv.org.uk, provides interactive services to suit different people’s needs, including:
- privately and securely storing information to help track and manage your health and treatment better
- reminders for your clinic appointments
- forums to help you build HIV support communities and swop support
- online counselling and advice
- supporting HIV action campaigns
Watch YouTube of the interactive parts of the website
Life Plus has tailored versions specially for Africans, gay men, young people and everyone
Sign up
To get the most out of the site and before you can use some of the sections (like the forums), you need to register. You register at a secure (https) webpage.
Anyone with HIV in the UK can register.
Web and video conferencing at some clinics
For people who don’t have the internet at home (or on mobile), THT is working with some HIV clinics to offer free internet access to this website and video conferencing, so people can talk to experts while still at the clinic.
Elton's welcome
Sir Elton John, Founder of the Elton John AIDS Foundation said: “In many ways, the UK response to prevention and treatment of HIV has led the world. I am proud to be launching a new era in HIV services, delighted to be working with THT again, and hopeful that this approach may see opportunities for the management of other long term chronic conditions.”
Anne Aslett, Executive Director of EJAF said: “ When some 30% of HIV patients in the UK who attend their first clinic appointment don’t return, and challenging ARV therapy can result in unplanned treatment breaks, we were looking for a programme that could really help people begin treatment if they needed it and stay adherent for the long term. Life Plus does this in a very flexible and responsible way that also complements and supports healthcare providers.”
Sir Nick Partridge, Chief Executive for Terrence Higgins Trust said: “Life Plus is a very exciting new type of service provision and comes at a critical time to support the increasingly high numbers of people living with HIV in the UK. HIV is a complex condition so it’s vital that people get the best possible level of support, accessible in a multitude of ways, to ensure they remain healthy.
“HIV service providers and clinicians across the country have been fundamental in shaping Life Plus and these services have been designed to reach people in both rural and urban areas, whether they’re newly diagnosed or have been living with HIV for many years. Thanks to the Elton John AIDS Foundation these services will revolutionise support for people with HIV, helping them to manage their health and treatment more effectively.”
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GP Guide - Migrants' Health
posted: 26/01/2011
The Migrant Health Guide is a free new online “one stop information shop” for GPs and practice nurses who are working with migrants.
It comes from the Health Protection Agency who have produced it because migrants health needs are often more complex than for other people. HIV is included.
The online guide gives doctors and nurses easy access to the facts, so they can improve their patients’ care and quality of life.
Although most migrants to the UK are healthy, TB and HIV and other conditions are more common.
The guide supports diagnosing and managing a range of typical migrant health conditions. Early diagnosis and prompt treatment of HIV and other conditions is important for the health of the individual and to reduce onward transmission.
Produced by experts working with primary care practitioners, it comes with the blessings of the Royal College of General Practitioners and the Royal College of Nursing.
Key Recommendations
- Know your local migrant population and their rights to care
- Teach patients how the NHS works
- Assess new patients using the checklist and their country page
- Vaccinate and immunise as normal
- Watch and test for infectious diseases and conditions typical of their country
- Check and advise on any plans to visit friends and relatives abroad.
The Migrant Health Guide has
- detailed information for each country
- tools for assessing migrant patients – new patients, patients with symptoms, identifying more vulnerable patients
- how to talking about the NHS with migrants – explaining it, migrants rights to treatment, languages and interpreters, cultural awareness
- sections about migrant health conditions (including HIV), infectious diseases, vaccinations
Migrant Health Guide
HIV in Primary Care : The best HIV guide for GPs and primary care is (free download) HIV for non-specialists, by MedFash.
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