by Chris Morley

Only 42% of the people diagnosed with HIV in the USA receive continuous HIV medical care after their diagnosis (seeing their HIV doctor at least every six months), according the the first national study in the USA.

• 28% had a gap of at least one year between HIV medical check ups
• 31% let 7-12 months pass between their appointments.

Who are the people missing care some of the time and what are their reasons? What are the consequences and what might be done to reduce the harm?

Over 17,000 adults attending 12 clinics within the HIV Research Network across the country, were surveyed by the Perelman School of Medicine, Pennsylvania, who reported their findings in the online journal AIDS in March 2012. This summary is based on a report in Medical News Today.

Why continuous HIV care is better

• People with HIV whose health is regularly monitored and treated are less likely to become sick
• People receiving continuous treatment are far less infectious and this very significantly reduces the spread of HIV
• Regular attendance cuts total health costs by preventing serious health problems from developing that require expensive hospital treatment.

So regular, frequent HIV care means better longer term health for the person with HIV, fewer new people becoming infected, and lowers HIV health costs.

Who’s more likely to attend regularly for HIV care?

• Patients who begin treatment on Medicare, not private insurance
• Older patients
• Men infected through sex with men
• White patients
• Women
• People with very low CD4 counts (or an AIDS diagnosis) on starting care.

Sometimes missing care

So we may assume that the people more likely to have gaps in their care (of over 6 months) will broadly be the mirror image:

• People with private insurance
• People without healthcare insurance
• Younger people, including those infected by mother to baby transmission
• People infected through Injecting Drug Use
• Heterosexually infected people, most especially Heterosexual Men
• African Americans, Hispanic people, Native Americans, other ethnic minorities and migrants

At risk of missing HIV care

The researchers themselves suggest that HIV healthcare providers should treat the following people as at risk of not attending as regularly as they should:

• Symptomless people, who may think they are well enough to skip appointments
• People with depression, anxiety, or with difficulties accepting their diagnosis, or with other mental health conditions
• People using substances (alcohol, drugs)
• People with practical difficulties in their lives: poverty or debts, long working hours or low wages, unable to take time off, poorly housed, with childcare responsibilities, with travel problems
• People with other health conditions and disabilities
• People who move home or district, especially if this is often
• People who have changed doctors
• People jailed, or otherwise institutionalised.

Future work

The study authors suggest standard criteria should be developed to decide the  appropriate gaps between appointments for people in different circumstances. Some people will need personalised care plans based on the stage of their HIV illness, and their particular social circumstances.

More studies are needed to pinpoint the times when some people are more likely to fail to appear for appointments, and to identify what works to ensure people do attend every time.

Using insurance records data may help track people through changing situations and help establish which are the patterns that lead to increased risk of missing continuous HIV medical care.

Other research and experience in other countries

With 68% of the people with HIV in this US study not attending for HIV check-ups and care at least once in every six months, the USA appears to have one of the worst national HIV care regular attendance records in the developed world. This is the first national USA study of HIV care attendance but other countries have been tracking HIV healthcare non-attendance for some years.

The USA can therefore benefit from using other countries’ experience to  help  understand better what is happening, and consider adopting solutions that have already been found to reduce the numbers missing HIV  appointments.

For example, in Northern France, 13% disappeared for at least 12 months immediately after their diagnosis, and over half of those returned after an average lapse of 19 months; but almost half of those returnees by then had a dangerously low CD4 count of under 200, and another one quarter returned and were then given an AIDS diagnosis.

3/4 of those who dropped out suffered serious health and life expectancy consequences. There was a more-than-fivefold increase in the chance of dying in the year after return, compared with people who had stayed in care.

Suggested ACTIONS for healthcare and clinical staff

• Tell people, when giving the positive test result, that coming to ALL your appointments and taking treatment as recommended, keeps most people well, with a near normal life expectancy. That it is really important to come, even when you feel very well and have no symptoms.
• AND the people who miss their appointments are five times more likely to die within the next 12 months than those who keep their appointments.
• Do everything you can to obtain a wide range of ways to contact people, and permission to use all these, with discretion.
• Send SMS text reminders a day or so before the appointment.
• Quickly and rigorously follow up all people who don’t attend.
• Strongly encourage people newly diagnosed to become an active user of a community HIV project as soon as possible. This is because contact with and seeing other people like themselves who are living well with HIV is immensely reassuring and supportive and also improves mental and physical well-being. It counters the  stigma and isolation of living with HIV. It provides a safe space to talk about HIV. The clinic’s messages will be  reinforced by what other people living with HIV and community volunteers and staff say. Clinic staff giving a positive diagnosis must understand that most people getting their HIV diagnosis will remember only fragments of the important information they are told by the clinic. The shock of diagnosis means many mishear and misinterpret the limited amount they do remember.

In London, UK, where free HIV treatment for all is provided through the National Health Service, a study at London’s King’s College Hospital found that 40% of the patients seen at least once between 1995 and 2005, were not seen at all during 2006. Crosschecks with the national anonymised HIV database held by the Health Protection Agency, found half (20%) were using another HIV clinic, a small number had died, but more than 1 in 5 (over 20%) of all their patients were completely missing from  HIV care throughout the snapshot year of 2006.

Compare that 20% missing with the 68% missing in the USA.

There are a wide range of studies from British and other countries’ HIV clinics using different measures, finding various levels of loss, a variety of common causes, and making a range of suggestions for action. A 20% attrition rate is about average.

Some hospitals are clearly better at retaining patients than others; some HIV clinics have many people with complex problems and needs; in the bigger cities where there is a choice of HIV treatment centres, there is some ‘churn’, people going to another hospital without telling the first, because they have moved or wanted a change.

There is a wealth of detailed information, exploration of the reasons people disappear, and suggestions for ways to reduce the loss of people from HIV care, in this detailed report of experiences in London and Manchester, UK

Lost to care: the mystery of the disappearing patients in HIV Treatment Update.

This is the most thorough resource available, incorporating lessons from a range of European studies. Reading and acting on the various findings is recommended.

Other useful papers 

Reaching Lost to Care Populations Clinical Infectious Diseases 2006, full text free online.

High rate of loss to clinical follow up among African HIV-infected patients attending a London clinic: a retrospective analysis of a clinical cohort. Journal of Int AIDS Soc. 2010, abstract.

Many Black, HIV-Infected Women in Mississippi Are Lost to Care After Giving Birth Interview with Aadai Rana MD The Body, 2008, with weblinks to two other resources 8

Differences and disadvantages in the USA

There are a number of reasons why it is more likely many people will miss HIV care appointments in the USA than in other countries. These help explain why only 42% of US people with HIV attend HIV clinic at least once every six months. This low rate of regular attendance means that HIV clinics in the USA must work very much harder to reduce the 68% of no shows.

• US health care is often excellent but without doubt the most expensive in the world. Large numbers of people have no health insurance, or inadequate health insurance; there are problems accessing and with  inadequate funding for the public healthcare programs, Medicare and Medicaid.
• HIV is an expensive healthcare condition to treat.
• Co-infections and other co-morbidities are common, compounding treatment complexity, treatment adherence, and increasing health costs.
• Distances to HIV treatment centres and travel difficulties may be considerable.
• HIV stigma and discrimination seems particularly rife in many parts of the USA. There are no international data comparisons available yet, although the international HIV Stigma Index will help answer this need. Lambda Legal carried out a USA HIV stigma survey within US healthcare in 2009 and publish a factsheet detailing discrimination and stigma in HIV healthcare and elsewhere.

These and possibly other factors contribute significantly to the high rate of missed HIV appointments and loss to HIV care in the USA.

~Chris Morley is a community HIV policy and practice expert based in NW England. He researched and co-authored for the UK’s HIV Treatment Update: Lost to care: the mystery of the disappearing patients.

He’s worked on a wide range of English national and regional HIV policy and practice issues including

• making free HIV treatment available to all migrants
• ending the prosecution of people living with HIV for HIV transmission
• promoting the use of HIV treatment as part of the HIV prevention toolkit
• developing support for gay men living with HIV on using HIV treatment to prevent onward transmission
• making gay men’s HIV prevention work friendly and relevant to gay men living with HIV
• combating HIV stigma and discrimination
• supporting teenagers and children living with HIV in the care system
• readying adult HIV services for older teenagers to transfer
• developing services for older people living with HIV

Related articles

• HIV Diminishes Lung Function (dgsmith.org)
• Shedding light on HIV stigma and discrimination (voiceforaids.wordpress.com)
• Standards of Care: What Really Matters to People with HIV? (part 1) (hivpolicyspeakup.wordpress.com)
• Raising Voices Against HIV On The Reservation (npr.org)
• A ‘ray’ of hope for HIV treatment (marsdd.com)