'Remarkable' Improvements - UK HIV Patients

posted: 02/08/2010

People taking HIV treatments were broadly doing much better between 2000-2007, and things will continue to improve until at least 2012, says a report in HIV Medicine. The researchers say that the improvements seen between 2000 and 2007 are “remarkable”.
 

Since 2000 death rates have continued to fall in real terms, and the number of people with a low CD4 cell count (below 200) has also halved and there has been a big rise in the proportion of people with an undetectable viral load. Although the proportion of people with triple-class treatment failure has risen, nonetheless over half the people with triple HIV drug class treatment failure still had an undetectable viral load.
 

Five out of six people on HIV treatment have undetectable viral load
“The success of ART [antiretroviral therapy] has improved markedly over the period 2000-2007, with five in every six ART-treated patients having a viral load below 50 copies/ml. Nine in 10 of all patients now have a CD4 count above the particularly high risk level of 200 cells/mm3”, comment the investigators.
 

Watching for improvements
The study was a reality check, to see if the key outcomes for HIV-positive people using HIV clinics in the UK were being maintained, or even improved. They checked four key markers of the success of HIV treatments between 2000-2007: deaths, low CD4 cell count, multi-class drug resistance, and detectable viral load. They also designed a computer model to project how these things may change, for better or worse, between 2007 and 2012.
 

To do the study they used data in the UK Collaborative HIV Cohort (UK-CHIC), as well as the Health Protection Agency’s Survey of Prevalent HIV Infections Diagnosed (SOPHID) study. The number of people in the UK-CHIC rose by over 50%, from 9041 in 2000 to 14,812 in 2007.
 

By 2012 there will be 74,000 people using HIV clinics in UK
When these were combined with data from the HPA, it is now expected that the total number of patients receiving HIV care in the UK will increase to 74,000 by 2012, of whom 73% would be taking treatments.
 

Different types of HIV drugs
By 2007, 81% of people having treatment have taken an NNRTI, 56% a protease inhibitor, and 39% had experience of all three of the original classes of anti-HIV drugs.
 

Doing better - Fewer people have low CD4 counts, and more have undetectable viral load
There was a substantial fall in the proportion of people with a CD4 cell count below 200 (19% in 2000, 8% in 2007). A CD4 below 200 makes opportunistic HIV illnesses more likely. The fall in low CD4 counts was matched by a rise in the percentage of people on treatment who have an undetectable viral load - undetectable means below 50 (62% in 2000, 83% in 2007). An undetectable viral load means the treatment is working well at keeping HIV under control, and means people are much less likely to pass on HIV.
 

Deaths stable
The observed annual number of deaths amongst people with HIV remained stable between 2000-2007, and the computer model suggested that there would be no substantial increase through to 2012. Death rates plummeted after effective combination treatments began in the mid 1990s. The investigators comment, “there is no apparent increasing trend in the numbers of deaths, despite the increasing number of people infected with HIV, indicating a decrease in the death rate.”
 

More have used the three main HIV drug types
The number and proportion of people who have now taken the three main classes of HIV drugs has risen from 14% in 2000 to 19% in 2007. Based on data from the UK-CHIC, they estimate that the proportion of patients with extensive triple class treatment failure increased from 1% in 2000 to 4% in 2007.
 

However, better HIV treatment and new drugs are more than keeping pace with this. The proportion of people who had extensive treatment failure leading to a detectable viral load fell from 80% in 2000 to 48% in 2007.
“This decrease is projected to continue as more patients start newer drugs, including those from the newly available classes such as integrase inhibitors and perhaps CCR5 antagonists”, write the researchers.
 

Less transmission of drug-resistant HIV
Such a fall in the number of treatment-experienced patients with a detectable viral load is likely to have public health benefits. The investigators comment, “our results have positive implications for future transmission of resistant virus, with the proportion of new infections with resistant virus predicted to remain low.”
 

Outlook brighter even for people with extensive treatment experience
The researchers believe that the improvements in outcomes between 2000 and 2007 are “remarkable”.

They conclude that newly licensed drugs and future developments in HIV treatment and care will mean that further improvements in outcomes are likely for people who have been extensively treated.
 

Source

Reference : Bansi L et al. Trends over calendar time in antiretroviral treatment success and failure in HIV clinic populations. HIV Medicine 11: 432-38, 2010.

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Baseline Magazine Out

posted: 12/07/2010

The latest issue of BASELINE magazine for people living with HIV is now out. You can read an online version on the web.
This issue has some interesting features and news on

• Microbicides and vaginal rings
• Stigma around HIV
• Real stories and experiences in 'Mylines'
• Encourages people who have not yet started any HIV treatment to consider joining the START study. This is a major international effort to decide when is the best time to start HIV treatment - when your CD4 count is 350 (as now), 500, 700, 900, or should people start HIV treatment as soon as you are diagnosed?

If you sign up now you would need to travel to Leicester, London, or Brighton - they would pay your travel costs. Next year some other UK clinics will offer the START study. 

Read about the advantages of joining the START study, and what it would mean on pages 14-16

• News on HIV treatments, hepatitis, global, UK and healthy living
• Hotline - arts and entertainment
• Starting HCV therapy
• Details about the BASELINE website launch 

Read Baseline online here

You can email them to ask for each issue of the pdf version to be emailed to you

Better HIV Treatment Taking

posted: 29/06/2010

Researchers at the London School of Pharmacy have started a £2 million programme to improve how people take HIV treatments. They found out earlier that within six months of starting HIV treatment, more than one third of people were not taking HIV treatments properly.

Taking HIV treatments properly is tough for some people. For HIV treatments to work properly, you need to take all your HIV medicines at the right time, and every day. Missing doses means HIV will become drug resistant and the treatment will stop working properly.
 

The pharmacists are keen not to blame people for not taking HIV treatments properly, and instead want to understand things from the point of view of the person taking them, and find ways to give better support to each person.
 

Lead researcher, Rob Horne said “Health practitioners have a duty to facilitate informed choice about ART and to support optimal adherence in the long term. This research programme will provide an evidence base to help clinicians do this,” Professor Horne added. Pharmacists already know that not taking treatments everyday seems to make sense to people who don’t have any symptoms, or who want to avoid side effects, or when people are worried that the drugs may cause harm, or make you dependant.
 

They also hope this 5 year study, funded by the National Institute for Health Research, will help pharmacists improve treatment taking by people with several other long-term conditions, including asthma, inflammatory bowel disease, bipolar disorder, chronic kidney disease, renal transplant and epilepsy.
 

Treatment taking information and help

If you want more information about taking HIV drugs properly NAM have a useful booklet called adherence and resistance that you can download free and iBase also have useful guides here
If you want to talk about this with one of our advisers, please call 0161 274 4499 or email an adviser

Source

HIV Treatment Charging Harms

posted: 28/06/2010

The UK rules that mean some migrants have to pay for HIV treatment are harming the health of migrants and the UK public, says a new study in the journal AIDS Care.

The study of African migrants with HIV in London found some migrants delay taking HIV tests, some only go for HIV treatment when they are so sick they need an ambulance to take them to hospital, some use herbal treatments that don't work, and others send abroad for HIV drugs but don't take enough of these.
 

Findings and the government review

This Wednesday the government ends its public consultation on changing the rules and guidance about who has a right to free NHS treatment. Anyone who has a sexually transmitted infection (STI) or an Infections Disease always has a right to free treatment, but not if they have HIV. The proposed new rules and guidelines still bar some migrants from automatic free HIV treatment. While asylum seekers and those with leave to remain are entitled to free care in NHS hospitals, refused asylum seekers and undocumented migrants, including pregnant women with HIV, among others, are sometimes handed very large bills for HIV and other medical treatment.
 

The researchers interviewed HIV-positive migrants from Zimbabwe, Zambia and South Africa who live in London. 70 people took part in eleven focus group discussions.
 

Problems getting a GP
Even though there is no law stopping migrants from having a GP or free primary care, people said they had problems even registering with a GP. They are often asked to show documents that they do not have (for example, their passport – these are often held by the Home Office / UK Borders Agency because they are making an asylum claim or other application).
 

Waiting until you need an ambulance
The law says all treatment in a hospital Accident & Emergency department is free-of-charge for everyone. Many people in the survey knew this, and said they did not try to get treatment until their condition was so serious that an ambulance was needed. One man said:
“You would rather wait for a situation where you get taken to hospital by ambulance because even if you walk in they want to know who is your GP. And if you don’t have one they become very suspicious.”
Accident & Emergency (A&E) treatment is extremely expensive to provide. Moreover, in most cases, the person then needed immediate HIV treatment and a lengthy stay in hospital.

The rules say if you are admitted to a hospital ward after A&E, or are referred to another department (eg the HIV clinic) then you will be charged; but HIV treatment should always be provided because it is 'immediately necessary.' If you can't pay the bills, the hospital will have to cancel the debt anyway.

Some people had received bills for several thousand pounds for hospital admissions, surgery and treatment. The researchers found that these experiences often affected people’s feelings toward health providers.
 

In hospital but fearing bills and immigration
People who were entitled to free NHS care feared intrusive visits from immigration and hospital officials. For example one woman who had been recently diagnosed with HIV received a bill for hospital treatment:
“I was worried how am I going to pay this £4000? So what kills you first is the stress and worry . . . I found myself thinking if I did not have indefinite leave to remain in this country then what would I do?... You’d just try to go away, you’d remove the drip and run away from there before immigration got there.”
 

Do it Yourself treatment
Some people said they treated themselves. Some sent for drugs in their home countries, but said they took too few pills for them to work properly, for example. Some had depended on herbal remedies and other alternative treatments, and sometimes delayed taking a HIV test until it was clear herbal and alternative treatments were not working. One woman said:
"There are some people who do not have papers in this country, who can’t have access to a GP or a hospital and they have to rely a lot on the traditional medicines."
Although HIV testing is free for all (on public health grounds), HIV treatment is not. People said this discouraged others from HIV tests:
“If I cannot access services, then there is no reason for me to test. If I test and I know I’m HIV-positive, I know it will be very difficult to access [treatment].”

The researchers end by saying that current policies for charging some migrants may appease a part of the UK electorate but act as a barrier to the uptake of HIV testing and treatment. Moreover, these policies are pushing some people to resort to other forms of treatment that may be costly, harmful or ineffective. As well as having implications for the health of individuals, the policies are likely to have an impact on the onward transmission of HIV.
 

Campaigning for free HIV treatment for all
This Wednesday the Department of Health closes its public consultation on planned changes to the rules and guidance for free NHS treatment. This does not include adding HIV to the list of sexually transmitted infections and infectious diseases that would mean free treatment for everyone. George House Trust and the HIV sector are campaigning for free HIV treatment for all.

Source and reference 
Thomas F et al. ‘‘If I cannot access services, then there is no reason for me to test’’: the impacts of health service charges on HIV testing and treatment amongst migrants in England. AIDS Care 22: 526-531, 2010.

HIV Treatment Rights Review

posted: 23/06/2010

Wednesday 30 June is the last chance to tell the Department of Health whether its plan to update the law and official guidance on who is entitled to free NHS hospital treatment is right. At present some migrants with HIV are charged for HIV treatment, although every other sexually transmitted infection (STI) and infectious disease is always treated for free, for everyone. The rules affect lots of other people in other ways but our focus is on access for all people in this country to free HIV treatment.

Free treatment for STIs like HIV, and infectious diseases makes financial and disease management sense. It saves money and stops diseases spreading when states provide free treatment for these for public health reasons. Untreated conditions spread diseases and increase the total bill.

New Regulations - useful changes
The new regulations propose some useful changes:

• Refused asylum seekers getting Section 4 or Section 95 support will be exempt from charges
• Primary care services are explicitly excluded from charging
• Unaccompanied migrant children will be exempt from charges
• People with an Article 3 claim will be included alongside people seeking asylum or humanitarian protection, and so will be exempt from charges

New Guidance - some good bits

The new official Guidance is also better:

• Maternity treatment is now defined as 'immediately necessary' treatment. This means there will always be a right to treatment and it must be provided. But a bill could follow.
• The Guidance does not yet say, but we are hopeful that HIV will also be defined as ‘Immediately necessary treatment’ because that is what the British HIV Association has formally told the Department of Health.
• Overseas Visitors Managers and clinicians are instructed to tell patients that all ‘immediately necessary’ treatment will not be withheld, regardless of their ability to pay.

Want to help?

The major problem with the rules is that there is still no automatic right to free HIV treatment. The Department of Health says it is reviewing this rule. We think this shouldn't wait a moment longer and HIV community organisations are making the case now for free HIV treatment for all.

The review of the rules and guidance was started before the election. Now there has been a change of government, an emergency budget, cuts and more cuts to come in the autumn Spending Review, so it is important to support the positive changes they have made. We want to push the Department of Health to take the sensible next step of adding HIV treatment to the list of Sexually Transmitted Infections and Infectious Diseases which are all treated for free, whoever you may be. And we want to discourage the Government from making some unhelpful changes that it plans.
 

NAT (National AIDS Trust) response

NAT have prepared a fairly simple response for some HIV organisations. This deals with the key points. You could use this - just add your name and details in the first pages and send it to them by email. You can of course say whatever you wish and make your own points.
 

If you want to comment in more detail you could look for more in the Model Response you can find on a blog set up by Medact and other community organisations that are campaigning together.
 

Here are all the Department of Health papers for the consultation. 

George House Trust draft response

Here you can read the draft response of George House Trust.
Please note that this is not our final or official view but we are sharing this to help others, before the official deadline. We welcome any comments and suggestions.

We have considerable experience with HIV treatment charging and this draft is built on our experience, expertise, and we are especially grateful to NAT and the blog for their detailed work on this. 

This George House Trust draft is more detailed than the NAT response above and it includes some significant additions. 

Two of these George House Trust extras are 

• much better Guidance is needed on who fits the definition of 'ordinarily resident'. The details are for legal experts BUT this is really important. The poor Guidance on who is 'ordinarily resident' has caused most of the problems with charges for HIV treatment in NW England. We have won almost every case we have argued on this point. We have been able to argue that most migrants with HIV who are charged are in fact 'ordinarily resident' in this country and so should never have been charged. If you can show you are 'ordinarily resident' none of the charging rules apply.
• There is no system for independent reviews or appeals - like there is if your claim for a state benefit is refused, or your asylum claim or immigration appeal is refused. In the 21st century, basic rights like hospital care deserve a system of independent reviews and appeals considered by an independent Tribunal chaired by a judge, so people can obtain justice and justice is seen to be done.