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By Tom Rosshirt — Originally published in Creators Syndicate on 20 June 2012

My brother Matt died of AIDS 26 years ago today, passing away in his bed in my parents' home in Houston.

It was a benighted time for people with AIDS. There were no antiretrovirals then. There was nothing much you could do for an AIDS patient but hold his hand. And many people still thought you could get AIDS by touching. My parents knew of individuals who'd been fired from their jobs for volunteering for AIDS organizations. That's how crazy the fear was.

As Matt was dying, we were befriended by a man named Lou Tesconi, a volunteer from the local AIDS organization. Lou came by to visit with Matt and to offer whatever service and kindness he could to my mom and dad.

Shortly after Matt died, Lou began studies to become a Catholic priest. Within the year, he was diagnosed with AIDS and kicked out of the seminary. Lou was a lawyer by training and temperament. He appealed the judgment to a Catholic bishop, who then asked Lou to found and head a ministry for people with AIDS. It was called Damien Ministries and was established in a poor part of Washington, D.C.

In early 1989, when the country was still very ignorant and fearful of AIDS, Lou got a call from the White House. First lady Barbara Bush was planning to visit Grandma's House, a home for infants with AIDS. It was one of the very first outings in her tenure as first lady, and Lou was asked to join a team of people to brief her privately before the event.

During the briefing, Lou told me later, he said: "Mrs Bush, it is a fantastic thing that you are holding these babies with AIDS. But the country sees them as innocent and the rest of us with AIDS as guilty. The whole suffering AIDS community needs a collective embrace from you today."

Lou thought he was speaking metaphorically. Apparently, Mrs Bush doesn't do metaphor. She stood up, walked over to Lou and gave him a big hug.

After the briefing, Mrs Bush took a tour of the facility as she talked to the press. She hugged, kissed and played with three little girls and then nailed the message: "You can hug and pick up babies and people who have ... HIV. ... There is a need for compassion."

At the news conference afterward, Lou stood by his point on Mrs Bush's visit: "I'm afraid that it may send a message that babies are innocent and can be helped," he said, "but that the rest of us aren't." He added: "I told her it would certainly help to get a collective hug from the first lady."

Then, again, this time in front of the cameras, Mrs Bush wrapped Lou up in a big embrace.

Mrs Bush wrote of this visit in her memoirs. She noted that "even then, people still thought that touching a person with the virus was dangerous." But she didn't give herself any credit for dealing a blow against stigma by embracing a gay man with AIDS in 1989.

Lou had a buzz from that hug that never went away.

In the fall of 1991, near Thanksgiving, I got a call from a friend that Lou had gone into the hospital again. He didn't have to tell me that it was for the last time. I called the White House and asked whether I could speak to the first lady's office. I was a nobody press secretary on the Hill. I didn't expect anyone in the White House to talk to me. Suddenly, I was speaking with the first lady's press secretary, Anna Perez, who had accompanied Mrs Bush to Grandma's House that day. I began to recount the events of two years before, and she saved me the time: "I remember Mr Tesconi," she said. I explained Lou's condition and said, "It would be so comforting for him to receive a letter from Mrs Bush."

A few days later, I went to see Lou in the hospital. As soon as he saw me, he reached beside his bed with a slow and shaky hand and pulled out a letter: "Look what I got," he said.

The letter was unflinching and full of love. She didn't duck the issue that Lou was dying. She used it as a pivot to say, "Well-done." At the bottom, in her own hand, she wrote to Lou that his life mattered, that he had made an impact.

That was a long time ago. But some things you don't forget — and shouldn't. In a time of ignorance, her wise touch eased the sting of exclusion for my friend and many others.

Thank you, Mrs Bush.

Tom Rosshirt was a national security speechwriter for President Bill Clinton and a foreign affairs spokesman for Vice President Al Gore.

Seven months after launching the catch-up plan in western and central Africa, progress on increasing the numbers of people on antiretroviral treatment continues to lag in the region. Many countries will not reach key targets by 2020 if the current systems remain unchanged.

"Overall we saw a 10% percent increase of people on treatment, which is not enough," said UNAIDS Executive Director Michel Sidibé. "Now, there is even more a sense of urgency."

Mr Sidibé, however, pointed to the success in the Democratic Republic of Congo where there was a clear increase in the number of people living with HIV accessing ARVs. The reasons for the positive trend included civil society and political leadership working closely together as well as community HIV testing and the training of 11 000 health care workers.

"More than ever there is a need to rethink health systems and alternatives for people to access health care," he said.

The call to delegate patient care to communities was a major rallying call during AFRAVIH, the international francophone HIV and hepatitis conference held in Bordeaux, France, early April. Mr Sidibé briefly shared the stage at the opening ceremony with the civil society organisation Coalition PLUS. They declared that the key to success in ending AIDS involved joining forces between doctors and community health workers and giving more leeway to communities to respond to the local needs of their own people.

Under the banner, "De-medicalize" the organisation explained that doctors will never be replaced but that there were too few of them and people living with HIV didn't require acute care.

Coalition Plus' recent report states that governments and the medical practitioners should delegate more tasks to nurses and community health workers. In addition to allowing for more targeted prevention and faster access to treatment, delegation of non-medical tasks would lighten the load on overburdened health systems. West and central Africa represent 17% of the total population living with HIV but 30% of deaths in the region are from AIDS-related illnesses. This is a region, according to UNAIDS and its partners, that can truly benefit from community models of care.

What worries Médecins Sans Frontières (MSF) is the risk of a significant drop in resources for treatment will hamper recent improvements in west and central Africa. This concern stems from the fact that Global Fund estimates a 30% drop in fund allocations to the region for 2018 – 2020 compared to signed HIV grants in the previous allocation period. In 2016, MSF was among the first to sound alarm bells regarding the region's high HIV death toll and the up to 80% of children unable to access antiretroviral therapy. MSF HIV Policy Advisor and Advocacy Officer Nathalie Cartier said that they supported the west and central Africa catch-up plan but that it needed to be fully implemented. "Political will has been promising but now it's time to make it a reality on the ground so that people living with HIV can reap the benefits," she said.

Global Fund supported the catch-up plan and works closely with countries in order to maximize the impact of the investments. They believe that leveraging additional domestic financing for health is crucial to increase country ownership and build sustainable programs.

All the more reason to decentralize healthcare systems and capitalize on innovations to keep health costs down.  HIV self-testing, new medicines and high impact strategies involving communities are critical to improving efficiencies.  "With point-of-care (POC) testing in communities and homes, delays are minimal between diagnosis and initiating treatment," said Cheick Tidiane Tall, Director of Réseau EVA, a network of pediatric doctors specialized in HIV care. “In the long run, that's a lot of people and resources saved,” he added.

Côte d'Ivoire Infectious and Tropical Diseases professor Serge Eholié couldn't agree more.  "Flexible health care systems capitalizing on various innovations makes a lot of sense," he said. Turning to the Minister of Health in the Central African Republic, Pierre Somse, he asked, 'How do you respond?'

Mr Somse, also a trained doctor, said, "We doctors will stay doctors. However, there is a need for us to lean on communities and vice versa."  He added, "at the heart of the issue are patients and they are and should always be the priority."

A new mobile app for people living with HIV, Life4me+, is now available for free in 156 countries and in six languages—Armenian, English, Estonian, German, Russian and Ukrainian. The app was created by a German–Russian activist living with HIV and his team and aims to simplify medical information and treatment for people living with HIV in eastern Europe and central Asia and beyond.

The app was developed based on the experiences of its developers and HIV activists. For people living with HIV, the app works like a personal electronic patient card. It allows users to stay in touch with doctors online, saving and displaying test results, a calendar of blood tests and a prescription history, and sets up reminders about when to take medication and schedule appointments. There are also functions for recording weight, chest volume, blood pressure, disease history, HIV drug resistance, etc.

It has an interactive map that shows the location of medical centres and nongovernmental organizations supporting people living with HIV, daily HIV-related news and up-to-date information and popular scientific articles on HIV. A help button contains links to hotlines on HIV treatment and prevention and psychological and legal support for women, adolescents and drug users. Currently, the links to the hotlines are available only to people living in some countries in eastern Europe.

With the patient’s permission, doctors can monitor medicine intake and track adherence. The app has special provisions to protect anonymity and confidentiality. All the data are depersonalized, so there is no risk of a person being identified as living with HIV, even if a user’s phone or computer is used by someone else. Life4me+ can be downloaded from Google Play and the Apple App Store.

An updated version of the app will be released on 1 December, which will include functions aimed at preventing new HIV infections, hepatitis C and sexually transmitted infections such as syphilis and gonorrhoea, with automatic reminders to test for those diseases. 

The PACT, a coalition supported by UNAIDS of more than 25 youth organizations and networks working on HIV, has launched a youth-led political campaign to respond to the barriers that put young people at risk of HIV.

Launched through a Twitter chat at the World Health Assembly, #uproot is a campaign running until the end of 2020 that is developed and powered by and for young people everywhere. It aims to increase the visibility of the root causes of risk and vulnerability, including inequities, violence, exclusion and stigma and discrimination, that jeopardize young people’s health, access to HIV and sexual and reproductive health services and rights and the sustainability of the AIDS response.

The campaign will focus its efforts on three strategic areas—challenging harmful legal and policy barriers that deter young people from accessing services, supporting youth participation in the HIV response and strengthening innovative partnerships between networks of young people.

Among the activities planned for this year, #uproot will develop scorecards on the progress achieved by countries on the issues that matter and affect young people the most, crowdsource recommendations to inform the design of youth-friendly HIV and sexual and reproductive health services, map and support youth participation in community responses and establish strategic alliances with medical students and parliamentarians and between youth networks from different countries and regions.

The Prince Mahidol Award Conference brought together international leaders in public health to discuss high-priority health issues in Bangkok, Thailand. The 10th annual gathering was held under the theme “Addressing the health of vulnerable populations for an inclusive society” and took place from 29 January to 3 February.

Her Royal Highness Princess Maha Chakri Sirindhorn attended the opening session, which included a keynote address from Nobel Laureate Amartya Sen, of Harvard University, who spoke about how living in a sharply unequal society affects health.

UNAIDS and the Global Fund to Fight AIDS, Tuberculosis and Malaria organized a session called From Exclusion to Leadership: Learning from the AIDS Response. The session explored how knowledge from the response to HIV could be used in addressing vulnerability, marginalization and social exclusion at the global, regional and national levels. It looked at lessons and approaches that are transferable to the broader health agenda.

Another session co-organized by UNAIDS and the World Health Organization was entitled Discrimination in Health Care—Determinants and Consequences. It examined how discrimination leads to poor health outcomes, leaving people who are stigmatized even more vulnerable to ill-health and its consequences.