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EspañolFrom collapse to case study: the Castro, birthplace of modern patient advocacy
This is a 'long read' article, designed to explore an issue or question in depth. A shorter summary article is available here.
Located conveniently at the end of the historic F Line, vintage 1950s street cars bring in tourists from the Fisherman’s Wharf into the heart of the Castro to marvel at the restaurants, designer shops, entertainment venues and community life in the district.
This jovial veneer of the community has some serious legislative and institutional frameworks supporting it. Today the Castro has patient representation looking after its interests at federal, state, county and district levels. They have advocates on most influential policy and decision-making structures in the health, social, economic, justice and environmental sectors. This community spirit and activism was born out of adverse circumstances, and it has come to serve the community well.
A new disease: what guards the guard?
In the 1980’s, many young men in the Castro began to fall ill and die from an unknown disease. Rapid case control studies established that they had a disease new to science. It was difficult to diagnose it early, as genomics was a nascent science then. Diagnoses had to be arrived at through clinical examinations of the symptoms and confirmed through progressive blood tests to see the white blood cell count drop.
The condition was given the name ‘acquired immune deficiency syndrome’ (AIDS). It was acquired and it attacked the immune system. The alarm bells began to ring. If the human immune system, that was guarding the body from infection, had come under attack from something, what would guard the guard?
Naming and shaming the target community
Case control studies initially suggested that AIDS only affected young gay men. However, studies weren’t conducted among intravenous drug users, blood transfusion recipients or even the heterosexual population.
The Centers for Disease Control and Prevention (CDC) immediately called the disease GRID, Gay Related Immune Deficiency Disorder, based on around 40 cases in gay men found with rare pneumonia and purplish blotches (Kaposi's sarcoma), a skin cancer. Only when the symptoms were found in the wider society did they change the name to AIDS.
In the 1980’s, the USA was led by an ultra-conservative Republican Party with a President and First Lady (Ronald and Nancy Regan) showing open hostility towards the lesbian, gay, bisexual and transgender (LGBT) communities. AIDS appearing in the Castro, an already stigmatised community, was a catastrophic and unprecedented development for the community’s LGBT advocates.
The USA declared an ‘open season’ for attacks on the gay community, principally led by hostile fundamental religious pastors and congressmen, through a complacent and colluding right-wing media. The key message of the incessant ‘gay-bashing’ frenzy was that AIDS was divine retribution that was justly deserved by the Castro - a biblical Sodom and Gomorrah amidst California.
Community fighting back: forming partnerships
The Castro's first response was self-reliance and community solidarity. They simply got together, laying aside any differences between the LGBT groups, and prioritised the needs of young men. Patient advocates recognised early on that there would be no external political and social support available for the community.
Solutions would need to be found internally. This turned out to be a bonus as patient solidarity, community care and ingenuity made the community come together and work innovatively to solve the problem. This community spirit and activism has endured and is now celebrated throughout the Castro with the rainbow flag flying over the district and in every city square in San Francisco.
Patient mobilisation, health literacy and patient empowerment
Patient advocates faced a ‘double-whammy’. They had a desperate, young and health illiterate patient community on one hand, and a hostile press and discriminatory, political machinery on the other hand. ‘Federal attitudes’ trickled down to state level public health policy and many states ignored any health issue affecting the LGBT groups.
Patient advocates had to create new culturally-sensitive health promotion and clinical care services. Mobile units went from house to house and many venues gave a room to the health professionals to run their community clinics during members’ nights. You could get information, advice and also a test done 24/7 across a number of places in the Castro. Telehealth, using confidential telephone helplines, emerged as a new intervention in public health. Staffed by gay health professionals and counsellors, these helplines extended the reach of public health programmes across the state.
Many gay lawyers stepped in to set-up pro bono legal advisory services to support the health professionals and patient advocates; this was the start of ‘patient empowerment’ programmes in the USA. By providing culturally sensitive information, advice and support, you could boost the self-efficacy and motivation of patients to take action on their own.
Taking charge of the media, message and policy
The community's initial retreat from the frontline created a vacuum in the media and public health policy; into this stepped religious fundamentalist and right wing media and organisations. They were now proposing the creation of a fenced-in ghetto around the Castro into which no one could go and no one could come out.
Men whose sexuality was not known to their families were now at risk of being exposed to all in the full glare of the media. Many left the district, spreading the virus into other areas, and others went underground and stopped seeking health services, allowing their conditions to deteriorate.
Local patient advocates had a great untapped asset in the community. They had failed to appreciate that many in its LGBT community were involved in the media industry as creative art directors, actors and actresses. Patient advocates recruited these creative people and set them up to fight back and take control of the media and the political landscape. The Castro community began to prepare very effective communication messages; the ‘creatives’ then turned these into striking images, films, adverts and posters. They began to ‘plant’ positive articles and adverts in the media. Many media planning and placement agencies were run by covert LGBT directors. They began to give any free time, space and spots to Castro’s patient advocates.
Addressing the social and economic factors of health
In the USA many employers have employee health plans set up with insurers. In the 1980s, insurers withdrew cover from any gay employees. Employers also started discriminating against Castro residents. In country where most health care was paid out of pocket, loss of jobs and businesses had a serious impact on a patient’s access to health care.
AIDS started having a social, cultural and economic impact on the life of the community. Media onslaught killed off community life, and a lack of an effective public health response allowed AIDS to reach a pandemic level of infection in the Castro. They were finding young men slumped in doorways, too ill to get up. Others were languishing alone in bed-sits unable to cook and eat, deteriorating by the hour.
A heightened level of fear and despair took root in the Castro. Beleaguered, with no one coming to the town's assistance, and many of its residents now unemployed, its economy collapsed, hitting many of the LGBT community owned businesses.
The Castro fought back in a creative way. They began the pink dollar revolution. The idea was simple: spend your money with LGBT friendly and supportive businesses. Try to keep your money circulating within the community. In return, business owners, landlords and restaurant owners started supporting community care projects.
LGBT residents in the care and nursing professions began to pick up sick young men collapsed in the streets and from their bedsits, and take them into their care. They would wash, feed and care for them to restore their dignity and strength. This action alone saved thousands of lives. Good nutrition and psychosocial support allowed immune systems to stabilise, and prevented opportunistic infections of other bacteria and viruses and the development of complications.
The community knew that they needed to win support from the rest of society. Whole-of-society responses were needed to check the spread of disease. Patient advocates had to use ‘asset-based’ community development approaches: looking internally to map your resources, experience and assets and mobilise these first, leveraging any governmental support later to sustain the ‘home grown’ programmes. The Castro’s AIDS Memorial Quilt project was the most powerful advocacy intervention as it grabbed the nation’s heart strings like no other campaigning intervention before.
Rock Hudson and Hollywood
Patient advocates always say that the tide turned in the Castro’s favour when Rock Hudson ‘happened’ in 1985. The death of an iconic and very ‘macho’ actor shocked the nation, especially the influential Californian Hollywood film industry. Grief and anger boiled over as Hollywood industry came out fighting for the LGBT community.
Hollywood bore down on the anti-gay media; leading actors boycotted giving interviews or having their pictures printed in media that did not respect gay people. With local elections looming, Hollywood actors came out in support of gay sympathiser candidates. The power politics of the California state and the USA was now being re-engineered for the Castro through these partnerships.
Taking control of research and drug development
Once patient advocates had started a balanced and responsible debate in the public domain, they had to secure resources and set up health services for these men and find appropriate treatments and cures. There was an acute need to undertake a needs assessment and attract researchers and biotech investors in California to develop diagnostic tools and treatments, and hopefully find a cure for AIDS.
Patient advocates helped to create a patient register. The register was used to undertake a needs assessment exercise. The register’s value was realised when, through contact tracing (a method now used to back-track many outbreaks of diseases like Ebola to their source), it was established that there were more transition pathways than just unprotected sexual intercourse. The most likely causes of infection were shared drug needles and contaminated blood transfusions.
The contaminated blood issue caused a panic. The Centers for Disease Control (CDC) was mobilised and large federal investment funds poured into research. This led to the finding of the causative agent and methods of screening it out. Both the Pasteur Institute in France and the National Cancer Institute found the retrovirus HIV (human immunodeficiency virus). The U.S Food and Drug Administration (FDA) licensed the first blood test to detect antibodies to the virus. Blood banks began to screen blood products.
The Castro’s patient advocates fact-tracked the discovery of Zidovudine (ZDV), also known as azidothymidine (AZT), as the first generation of antiretroviral treatments.
A secret weapon
The community's most secretive weapon was the support it received from LGBT policy makers and politicians; many had not ‘come-out’ and had remained quiet about their sexuality.
These insiders began to steer health policy and decisions their way. LGBT community fielded candidates in local elections, and supported congressmen/women who were friendly to their cause by getting them airtime and media space through LGBT friendly media owners. The profile of these politicians began to soar. The Castro made sure that the AIDS patient voice was heard more widely.
With almost 100% turnout of the LGBT voters, patient advocates elected supporters of LGBT-rights into power.
Health legislation
In common-law jurisdictions, many people use strategic litigations to secure court judgments that progress their rights. ‘Judge made law’ can trigger constitutional amendments. The Castro undertook much strategic litigation to advance health laws.
Conclusion
WHO has now issued guidelines for scientists, national authorities and the media to follow best practices in naming new human infectious diseases to minimize unnecessary negative effects on nations, economies and people. Naming a disease Gay Related Immune Deficiency Disorder opened up the Castro community to attack. Meanwhile, the virus was already spreading unnoticed in the blood-transfusion dependent, intravenous drug user community and the mainstream heterosexual communities of America unnoticed.
The ‘who was infected’ issue became the dominant media and public health policy driver for the next ten years. The most important issues of ‘infected by what’ and ‘how to prevent’ were lost. This delayed an effective coordinated response to control AIDS.
It is important that any prejudicial and discriminatory aspects of disease are control addressed sensitively at the outset. Epidemiologists have to think of their communication and dissemination strategies beyond the aetiology and clinical facts.
The Castro leads the way. If you pass through the town, drop in, have a coffee, and chat to the old-timers. It will be time well-spent.
