Chairs: Dr Simon Barton, Chelsea and Westminster hospital and Robert James, Birchgrove Group
Speakers: Dr Ed Wilkins, Manchester Royal Infirmary and Neil Gerrard MP, All Party Parliamentary Group on AIDS (APPGA)
Rapporteur: Deborah Jack, NAT
This session was for people who had a reasonable knowledge of HIV treatment and/or who wanted to find out more about the issues around access to new or existing treatment. It was held in the main conference hall and attracted approximately 100 participants.
Dr Simon Barton provided a brief overview of the issues in relation to developing new treatments and prevention methods, highlighting:
The need for fine tuning of new ARVs
The difficulty of securing funding for research trials
The role of pharmaceutical companies in the process
He stressed the need for patients and clinicians to work together and the need to understand each others’ dilemmas. He also emphasised the need for partnership in research as well as clinical care and pointed out the importance of positive people’s involvement in both the design of research and their participation in research studies.
Simon also touched on some of the treatment dilemmas, including when it was best to start taking drugs and when or if it was appropriate to take a break when the CD4 count goes up (for reasons of well-being – not cost).
Dr Ed Wilkins started by providing some background facts and statistics to provide a context:
There has been an increase of 15-20% in new HIV cases annually (Health Protection Agency) – a linear increase between 1997 and 2002
Patients are living longer
Drugs are expensive (typical cost £5,000-£9,000 pa) and there is no prospect of them getting cheaper.
Overall approximately 70% of patients are now on therapy
50% of new patients are on therapy
As a result of these factors, HIV drug spending is increasing annually; however, HIV budgets are no longer ring-fenced which causes significant challenges.
He then explained the funding process. The Department of Health (DH) allocate funding for HIV treatment to primary care trusts (PCTs) at a local level based on historic levels of expenditure. Consequently, the PCT has insufficient funds to meet the projected cost of HIV treatment and has numerous other competing demands on its budget. The commissioners of HIV services (who hold the purse strings) have to meet with the trust (who spend the money) for frank discussions and negotiations. In addition to the general lack of budget there is a particular difficulty in that there is no funding for unclassified drugs (e.g. NewFill) or new drugs developed in the year.
In order to fill the ‘gap’ there are a limited number of options available to the PCT, namely:
Diverting funding from other areas of PCT expenditure (non-HIV)
Diverting funding from other areas of HIV (e.g. prevention programmes)
Securing additional central funding
Spreading funding over 2 years -or-
Rationalising the services/treatment offered.
The most common suggestions made by the PCT to reduce costs are:
To cap the number of new patients being allowed treatment by introducing a waiting list
To refer patients to other units for treatment
To introduce strict treatment protocols using cheaper options
He described some examples of how savings could be made with a strict prescribing practice including: using AZT and 3TC separately and not as Combivir; not using Tenofovir in first line therapy; not using T20; and, restricted use of Mega-HAART.
He highlighted the principal reasons for the differences in drug availability in different units, namely:
Some treatment options were too expensive for small units and are only available in larger centres (where sometimes they were part of a trial)
There are frequently delays in drugs becoming available due to different licensing arrangements (particularly between the USA and Europe )
The existence of complex internal regulatory processes, including restrictions placed on drug usage by Drug and Therapeutics Committees. He pointed out that home delivery of drugs could reduce costs by saving a significant proportion of VAT.
Ed highlighted the particular difficulties of getting a new drug funded by the PCT and explained that there was a need to:
Warn the PCT in advance
Make a detailed submission to the local Drug & Therapeutics (D&T) Committee
Often agree conditions – such as savings elsewhere to offset the increased costs
He concluded by summarising the key areas that required funding now and in the immediate future. These were identified as:
Licensed HIV drugs (T20, FTC, Fosamprenavir, Atazanavir, Nelfinavir, Saquinavir)
Expanded access to Tipranavir
Co-formulated tenofivir/FTC and abacavir/3TC
Pegylated interferon and ribavirin for treatment of Hepatitis C (HCV)
Neil Gerrard started by explaining that he has been Chair of the APPGA since 1997 and that the purpose of the group was to bring together people with a common interest in HIV and AIDS with the aim of influencing government.
He explained that he has also for some time been involved with the AAPGA on immigration and refugees and, while in the past the two issues were quite separate, increasingly the agendas are overlapping, particularly with the increasing (primarily negative) media attention on HIV and asylum seekers.
Although the largest group of people living with HIV in the UK are men who have sex with men ( MSM ) and they are still a key source of new infections, the number of heterosexual infections is growing and a significant proportion of these are from African communities. However Neil stressed that the number of these who were asylum seekers was actually relatively small.
He identified three key areas of concern:
Waiting times for GUM services
The need for significant investment in sexual health services (a large number of which are provided in portacabins/sub-standard accommodation).
The disparity of access to prevention, testing, treatment and care, particularly the big difference between London and other parts of the UK
He specifically highlighted the problems of people coming into the UK getting information and access to services because of difficulties with regard to language, cultural issues and the structure of healthcare provision. He said that there was growing anecdotal evidence of people being refused treatment which was a major area of concern.
Although one of the main reasons cited for limiting access to treatment is cost, he pointed out that the annual cost of HIV treatment (around £300 million) was significantly lower than that for diabetes (£5 billion), alcohol abuse (£3 billion) and smoking-related illness (£1 ¾ billion).
He highlighted the lack of hard evidence of ‘Health Tourism’ – citing a THT survey showing that the vast majority of immigrants diagnosed in the UK had been here some time and were only diagnosed when they become ill – and said there were a lot of myths about ‘Health Tourism’ fuelled by media headlines such as ‘migrant tide of killer bugs’.
Neil did, however, acknowledge that there is increased pressure on service providers across the UK and pointed out that the dispersal of asylum seekers was putting pressure on budgets as resources weren’t matching the movement of people.
Although there have always been guidelines limiting overseas visitor’s entitlement to treatment, he was aware of growing pressure on Trusts to refuse treatment and he confirmed that the APPGA are trying to keep this issue on the agenda. Neil argued that as well as being a significant public health issue it was also a humanitarian issue and didn’t sit comfortably with the government’s commitment to ensuring access to treatment internationally.
He summarised the key issues that the APPGA were currently pushing for as:
The need for a national service framework (NSF) for HIV
More funding for GUM services (especially outside London )
Opposition to treatment refusal and mandatory testing
Increased access to prevention and treatment
He stressed the importance of HIV-positive people getting involved and suggested that they contact their local sexual health ‘lead’ to highlight areas of concern. He also suggested that individuals contacted their local MPs to raise their concerns. He said not to assume that MPs would be hostile, explaining that local experiences were really important and that that MPs will be interested if it seen as a local issue.
Q Concerns about the loss of ring-fenced funding. Questioner suggested a link to racism/ homophobia and asked if this shows that HIV is seen as legitimate target.
A Neil - understands the arguments against loss of ring-fenced funding but the reality is that it is gone and won’t come back. The challenge now is to understand what is being spent on HIV and try to protect budgets (difficult with the new structure).
Simon – was advocate of keeping ring-fencing but doesn’t believe the change is linked to racism/homophobia. Believes lots of pressures centrally and locally on delivery against national priorities and targets. His greater concern is good HIV commissioners leaving and taking knowledge with them. Stressed the need for HIV/sexual health to be a priority at a local level and that requires a strong local voice.
Q Worried that media headlines increase stigma, discourage testing and increase cost of treatment. Suggested compulsory testing should be introduced and asked about benefits and cost implications.
A Ed - people who present late do OK. Costs higher but not significant. Recognises that media have a lot of influence and positive messages in media can be helpful. Neil – doesn’t support compulsory testing in principle.
Q Technical question about Kaletra. Recommended on US website but his specialist won’t let him have it – says he’s keeping it in reserve
A Ed – difficult to answer questions about individual cases but explained that it was important for doctors to share rationale for decisions.
Simon – In London there is a move to rationalise therapy to minimise disparity and avoid problems of people needing to transfer units to get treatment.
Ring-fencing has gone so we need to make the current systems work
Doctors and patients need to understand each others’ rationale
Good communication, information and partnership are all essential for patients making choices of when to start treatment and which drugs to take
The benefits of HIV therapies must be emphasised but not hyped
The need to develop better therapies through research trials which are clinically relevant must be pursued
Research programmes need to integrate patients into their design phases
Mandatory testing of people (asylum seekers, health care workers, prisoners, etc) should be opposed
This workshop was evaluated by 69 people. There was a wide age range, the youngest participant being 18 and oldest 62. The average age was 41.
Gender
44 male, 21 female, 4 not stated
Ethnicity
36 white, 20 black African, 2 other non-white, 11 not stated
Sexuality
30 gay, 30 heterosexual, 2 bisexual, 7 not stated
Usefulness
Very useful |
Useful |
Not useful |
60%(41) |
39% (27) |
1% (1) |
28 people set themselves action points
Finding out more (36%)
Ask more questions
Check out a couple of websites
Get more information, as much as I can
Getting involved (14%)
Get more involved
Push local PCT to ring fence HIV money
Encouraged to get involved
Educate and inform others (11%)
I want to supply and teach about condoms
Facilitate more workshops
Will disseminate the information
Personal action (39%)
Have choice to change my meds
Look possibly at a dual treatment centre
Speak with consultant
Move on to Do You Have The Skills To Get Involved?