Sustaining African Community Leadership

posted: 14/01/2010

Sustaining Community Leadership is the theme of the latest issue of the African HIV Policy Network’s Newsletter. It has pieces on

• surviving the economic downturn
• the importance of Africans and others making their voice heard by voting in the general and local elections (which will almost certainly be on May 6th)
• HIV positive people being leaders and making a community impact
• Africans disappearing from HIV clinics (by Chris Morley, George House Trust’s policy expert)
• Resources and working to improve Faith responses to HIV, (they have more information on their website)
• HIV and the workplace – meeting the needs of staff with HIV
• Their media toolkit for working with journalists – details and download it from their website
• Young people using the web and mobile phones for HIV messages
• Fighting HIV stigma
• Using SHoutloud to have your say about your local HIV and sexual health services.

This Sustaining Community Leadership issue

 Past issues of AHPN's newsletters

Lost to Care

posted: 25/11/2009

People diagnosed with HIV who drop out of HIV clinics was first highlighted as national issue by George House Trust in Insight this year. Now people lost to clinics and care is covered in more detail in an excellent leading article in the latest issue of NAM's HIV Treatment Update.

'Lost to Care - the mystery of the disappearing patients' by George House Trust policy expert Chris Morley and editor of HIV Treatment Update Gus Cairns, tells why up to 1 in 3 people disappear from HIV care at some stage after diagnosis, whether this puts people’s lives in danger, and it offers some suggestions for how to deal with clinic drop out.

Stigma too
The same issue has an article on HIV stigma – Punching Fog. It tells how people with HIV telling their own stigma experiences through the UK section of the global website HIV Stigma Index is helping the stigma fight-back.

HIV Treatment Update

People living with HIV can get HIV Treatment Update free, others have to subscribe and pay; this issue (November 2009) will be published in a few months in the online archive, also on that webpage.

HIV Stigma Blamed for Clinic Drop Out

posted: 13/08/2009

People who feel stigmatised because they have HIV don’t go to their clinic as often as they should, American researchers have found. This reinforces George House Trust's own findings on the hundreds of people in NW England who have stopped using HIV clinics, or who have never used any clinic in the NW since diagnosis. 

The next issue of Insight  has a detailed investigation into what is going on and what needs to be done. It will be published on Thursday 20 August.

3 out of 4 have poor clinic attendance, and 2 out of 5 don't take treatment properly

The USA study showed that 77% of people had poor access to healthcare and 43% didn’t take their HIV treatment properly. People who reported feeling stigmatised were much less likely to visit their HIV clinic regularly than people who did not report feelings of stigma. The research also showed that poor mental health was associated with not taking HIV treatment properly.
 

Internalised stigma leads to fall in clinic use

“Our study provides important information about the association between internalized stigma and self-reported access to medical care”, comment the investigators.

There have been dramatic improvements in HIV treatment, and now the life outlook for many people living with HIV is considered almost normal. Nevertheless, HIV remains a stigmatised illness and this threatens the emotional, mental and physical health of all people living with HIV.

Stigma is a complex idea, but it is basically the shaming and blaming that is heaped on anyone who is thought to have broken the values and social norms of their community or wider society. Becoming HIV positive is socially disapproved of - like getting other sexually transmitted infections is disapproved of, but far worse.

Internalising the shame and blame

Most behaviour that society disapproves of leads to people absorbing and adopting some of the stigma - we come to believe some, or all of it, is true about us. We are surrounded by HIV stigma and it is hard to resist and feel good about yourself. This is internalised stigma and it is damaging to mental and physical health. Internalised HIV stigma is a bit like how some people who are gay (or female, or of an ethnic minority background, or with a disability etc.) come to self-hate themselves and believe the negative attitudes about gay (female, ethnic minority, disabled, etc) people that surround them. 

What they studied and found

Investigators from Los Angeles (LA) thought that internalised HIV stigma would be associated with three key aspects of HIV care:

• using HIV clinics 
• regularly going to clinics for HIV care
• taking HIV treatment properly - adherence.

202 people were surveyed from LA HIV clinics and support services. The research was undertaken in 2007.

Most (56%) were women and an equal proportion African American. The mean age was 43 years and 31% were gay men.

Measuring internalised HIV stigma - 1 in 3 endure significant stigma

Internalised stigma was assessed using a questionnaire which scored people’s responses on a scale of 0 to 100. The overall score was 41, suggesting that well over a third of participants had significant internalised HIV-associated stigma.

Overall, 77% of individuals reported having poor access to healthcare, 11% having no regular source of HIV care, and 43% poor adherence to their HIV treatment.

The investigators’ first set of statistical analyses showed that individuals reporting a high level of internalised stigma were much more likely to report poor access to HIV care, to lack a regular source of HIV care, and to have low levels of adherence to their HIV medication (the detailed statistics are in the journal article).

Internalised HIV stigma - four times more people drop out of HIV care

However, when the investigators allowed for other possible explanations, they found that internalised stigma was only really linked with poor access to HIV care. They also found that poor mental health, rather than internalised stigma itself, explained people not taking their HIV drugs properly.

1 in 3 report high levels of stigma

“Approximately one-third of participants reported experiencing high levels of internalized HIV stigma”, comment the investigators, adding “we found that respondents experiencing high levels of stigma had over four times the odds of reporting poor access to care.”

They note that their study was limited by its design and that more studies are needed to better understand what the relationship is between stigma and using HIV clinics.

“Such studies could enable us to examine changes in stigma and its contribution to health care and health outcomes throughout the disease trajectory”, conclude the researchers.

Stigma and mental health booklets

NAM produces two useful booklets on HIV & Stigma, and HIV & Mental Health. They are available free to people with HIV in the UK , as well as on their website, at George House Trust, and through HIV clinics.

Reference - full article is available free, either as a pdf file, or on a web page.

Sayles JN et al. The association of stigma with self-reported access to medical care and antiretroviral therapy adherence in persons living with HIV/AIDS (pdf). J Gen Intern Med (webpage online edition), 2009.

Source

Lost - Disappearing after Diagnosis

posted: 16/07/2009

A significant number of people disappear from HIV clinics after receiving their HIV diagnosis. We’ve noticed this from close study of NW HIV statistics. It's a problem that is now being recognised across the country. Up to 1 in 4 disappear and there are real concerns for the health of those individuals and for onward transmission.

1 in 4 disappearing
Homerton hospital in London found 30 (35%) did not attend any further appointments including eight out of the 37 people who had CD4 counts under 200. A quarter of people with CD4 counts under 200 (24%) disappeared from further care. People with CD4 counts under 200 are at high risk of many opportunistic infections such as PCP (the type of pneumonia common in people with low CD4 counts).

Another north London hospital, North Middlesex, found similar rates of disappearance both from existing patients as those people who were newly-diagnosed. The hospital found that between 2005 and 2009 157 patients out of 723 were lost to follow-up, a rate of 22%. This doesn’t count people known to have transferred to another clinic, who died (2%), or who moved out of the UK (1%).

Health Protection Agency cross-checking

Using the Health Protection Agency’s (HPA) anonymous database of HIV patients, the HPA found that 55 from North Middlesex had transferred to another London clinic (of whom one died), and 14 to a clinic out of London. This left 87 patients (12%) who do not receive any HIV care.

King’s College Hospital in south London reports that 5% of its patients actively disengaged from care or never returned for their results and – worryingly – nine patients (2.5%) who had never been informed of their HIV-positive test result.

5 more reports at Liverpool

In Liverpool this spring, the BHIVA conference heard five different reports of people ‘lost to follow-up’.

• 64 people from London’s Queen Elizabeth hospital,
• 17.6% of pregnant women diagnosed with HIV in London disappear,
• 38% of teenagers and young people under 25 become 'ghosts',
• 21% of people who tested at Kings College hospital in London vanished, as did
• 15% of those at Cambridge hospital.

Northwest England's missing and action
George House Trust spotted some years ago that there was something odd happening with the region’s HIV figures, because the number of newly diagnosed people never increased the total of everyone diagnosed by the same number. We checked all the possible explanations and none could explain all the losses.

We’ve been following the trend and noticed the gap suddenly widened in 2007, to nearly three times the number in the previous two years. The gap, the number disappearing from HIV treatment services, is now several hundred people across NW England.

We met with experts at the Liverpool Centre for Public Health and showed them our detailed findings and analysis for the period 1996 - 2007. They have now sent details (anonymous) to the HPA of 417 people who are recently missing from NW clinics, to check if any of the people are using clinics in other regions. We are waiting for the results.

Who is disappearing?
Looking at some of the data from London clinics, people disappearing seem

• a bit younger than the patients who stay, (mean age 40 versus 44),
• had been diagnosed for much less time (the average for established patients was 5.5 years) and
• much more likely to have had a detectable viral load at last visit (60% versus 20%).
• 1 in 5 had just received an AIDS diagnosis 
• 18% versus 7% had been diagnosed during antenatal care.
• 1 in 6 had been on a failing regime at their last clinic visit.
• African patients were not more likely to be lost to follow-up, but were less likely to tell the clinic when they had moved to another hospital
• An unknown number of these patients will have moved abroad but this can only be a tiny fraction of those unaccounted for.

What should we do?

People have every right to chose to ignore their HIV diagnosis and refuse any treatment offered.

However, we know that many people find HIV diagnosis their worst moment and welcome support to get through this crisis.

The 'disappeared' are telling us that there is much more that clinics and others need to do to improve 'patient retention' rates. HIV is a serious long-term condition that doesn't get better by itself but significantly damages health, and untreated, people are more likely to transmit HIV.

The evidence suggests stigma, fear, misunderstandings about HIV, and news about some significant stage in the person's HIV development, all play a major role in encouraging people to ignore HIV after diagnosis. These need dealing with better.

Frontline clinic staff who give positive results and immediate aftercare may need good practice guides, more support and some further training. There is evidence that clinics vary significantly in 'patient retention.' Some types of people (eg women diagnosed while pregnant, and people under 25 years old) also seem to be more vulnerable to loss from clinics.

The loss of such significant proportions of people from clinics after diagnosis needs detailed analysis and action. There is already enough evidence here for BHIVA (British HIV Association) to carry out an audit of HIV clinics' 'patient retention rates' and to produce best practice guidance.

Partial drop-outs and the community sector

There is also evidence that the community sector needs to act too. There are many people who are 'partial drop-outs' (people who are lost to clinics but seeing the community sector). The community sector needs to consider what more we can do to encourage people to attend clinics for example.

There are many people lost to clinics but still in contact with the community sector - 34% of all the people the community sector sees in NW England, 849 people in 2007. 23% of these people (504) have never been treated in NW England. (Chapter 4, Table 4.3, 2007 HIV in NW report)

George House Trust NW England analysis of people lost to regional HIV treatment 1996-2007 

Source for some of the data
Source for BHIVA conference reports 

York Hospital Loses HIV Notes

posted: 07/04/2009

Confidential medical records with details of 19 seriously-ill York Hospital patients were found in the street two miles away.

An investigation has now been launched about how the file, picked up by a passer-by, was lost.

The document revealed their name, age and medical history – with one person having HIV and syphilis.

The people affected were mainly elderly, except one 27-year-old. The hospital has apologised and is now investigating what happened.

HIV, confidentiality and stigma

Paul Ward, deputy chief executive of the Terence Higgins Trust said: "This breach is totally unacceptable. For anyone with HIV who is facing stigma, having personal information about their health being inadvertently made public is very worrying."

It could be difficult for a complex organisation like a hospital to get it right all the time, he added, but people trusted them.

"If there has been a failing we ask York Hospital to redouble its efforts to make sure it is able to ensure full confidentiality in the future."

Other patients had breast cancer, Alzheimer's, Parkinson's and multiple sclerosis. Handwritten notes found in the bundle gave details about their personal nursing care.

Mike Proctor, deputy chief executive of York Hospitals NHS Foundation Trust, said: "We take the protection of all patient information very seriously and we apologise to any of our patients and their families who may have been caused distress by this potential breach of their confidentiality."

The patients concerned would be contacted and reassured, he said. Policies on staff responsibilities for such information were clear. "We are appalled that details of this nature have been found outside the hospital."

He added that the trust was investigating the incident and would take appropriate action.

The papers were found by an unidentified person.

Source