Mediaplanet You have been committed to the fight against AIDS for over two decades, what encouraged you to become an advocate for awareness and establish the Elton John AIDS Foundation (EJAF)?

Elton John I can boil my answer down to two words, a very dear name — Ryan White. Meeting Ryan, his wonderful mother Jeanne, and his sweet sister Andrea in the mid-1980s and helping them during that terrible time when they were cruelly ostracized and terrorized by the very friends, church, and community that should have stood by them when Ryan was diagnosed with HIV/AIDS was truly a turning point in my life. They exemplified courage in the face of overwhelming adversity, responding to hatred and ignorance with love, understanding and education, turning their tragedy into an opportunity to make things better for hundreds of thousands of people living with HIV/AIDS. They also quite literally saved my life. Losing Ryan on April 8, 1990, and watching Jeanne and Andrea deal with their grief with such profound grace and humility motivated me to finally take control of my life, get sober, and find new purpose in my determination to honour Ryan’s extraordinary legacy. In 1992, that new purpose turned out to be the Elton John AIDS Foundation.

David Furnish I first met Elton in London in 1993, when the Elton John AIDS Foundation was still very much in its infancy. Naturally, as our relationship quickly developed, I also became very involved in the Foundation’s work. It has been an extraordinary privilege and tremendously rewarding to stand by Elton and help lead and shape this amazing international non-profit organization.

MP Why is it important to raise public awareness of this disease — its treatment and prevention — and how can Canadians do their part?

EJ HIV/AIDS is a communicable, sexually transmitted, epidemic disease for which we still have no preventive vaccine and no cure. For that reason alone, everyone needs to be educated about the disease, how it is transmitted, and how it can be prevented, and everyone needs to be regularly tested for HIV and know their status. Also, everyone who tests positive for HIV needs to be immediately linked to appropriate medical care and effective treatment. This is particularly important now because we have definitive proof that HIV-positive people who received effective treatment are 96% less likely to transmit the virus to others. We could stop this epidemic in its tracks — without a vaccine or a cure — if we made universal access to HIV prevention and treatment a reality worldwide.

DF As a Toronto native, I know how kind and generous Canadians can be. The steps Elton has already stated — getting educated about HIV, getting tested, and if necessary, getting effective treatment — certainly are an excellent start. Beyond these personal responsibilities, caring Canadians should also consider the following efforts: Make generous contributions and volunteer your services to local social justice, social service, LGBT, and/or HIV/AIDS organizations;and stand up for the human rights of all people — no matter who they are, who they love, or what they do — and when you see injustice, speak out! Social injustices in the form of racism, homophobia and transphobia, and sexism contribute tremendously to poverty, homelessness, and unjust incarceration. All of these societal ills create barriers to HIV education, testing, treatment, and inevitably cause more infections. If we want to end AIDS, we have to create a more loving, more compassionate, and more just society.

MP What advice do you have for Canadians who are at-risk of contracting or already living with HIV/AIDS?

EJ: If you are at risk of HIV infection, get educated about the disease right now. Utilize all of the HIV prevention tools we have now and know to be effective — use condoms conscientiously and properly and/or take PrEP under a doctor’s care. If you inject drugs, use clean injection equipment every time, don’t share your injection equipment with others, and please reach out to a local needle exchange for help and advice on other injection-related services and support. You may even choose to practice abstinence, if you wish. You have lots of choices for protecting yourself and others from HIV infection.
If you have tested HIV-positive, please, please, get to a doctor right away for proper medical care and effective HIV treatment. The best thing you can do to prevent passing the disease to others is to stay on effective treatment to keep your viral count low to undetectable, which is completely possible with the treatments we have today. Learn about effective HIV prevention methods and use them consistently.

Finally, seek out a local AIDS organization for continuing information and support to help you stay healthy. Once you are feeling well, that’s also a great place to start giving back to the community and help other people living with HIV.

DF: Know that you are loved and that there are people out there who care about you and about your health. If your family has turned away from you, please know that you are not alone. Find a local non-profit — perhaps a homeless shelter, or a social justice organization, or a needle exchange group, or an LGBT center, or an AIDS organization — that can help you take the necessary steps to care for yourself and develop the social supports you need.

The EJAF operates under the belief that AIDS can be beaten. How are the hurdles of today different from those of the 90s and early 2000s? How has the EJAF’s goals and strategy adapted?

EJ: Initially, the Foundation was established to raise urgently needed dollars for the very basic needs and services people living with HIV/AIDS lacked — food, lodging, transportation, medical care, education, legal support, and counseling. We very much wanted to help HIV-positive people to live with dignity. During those early years, everything we did, every fundraiser we held, every check we wrote, felt like acts of genuine desperation. We were witnessing such immense and wrenching suffering and neglect that it seemed we just couldn’t raise money and get it out the door fast enough when so many people were dying and there were no effective treatments available.

One of the smartest things we did as a fledgling organization was to partner with another organization – the National Community AIDS Partnership, a brainchild of the Ford Foundation – and utilize their already existing grant-making structure and process to select and award grants and get the money we raised into the right hands as quickly as possible. We didn’t need or want to reinvent the wheel when we were such a young organization. Over time, we developed the expertise and built the proper systems to conduct our own independent grant award process, and now we, in turn, can administer grants for other organizations.

In 1996, protease inhibitors came onto the scene, highly effective combination therapies were developed, and people who had access to these treatments began to get better and reclaim their lives. When this happened, the focus of our work evolved to begin addressing the specific needs of marginalized and vulnerable populations most at risk of HIV infection, working to eliminate the stigma and discrimination associated with the disease, while also continuing to fund programs providing direct prevention, treatment, and services for HIV-positive people.

This has continued to be our operating model. We monitor and evaluate the changing landscape of the AIDS epidemic — from the regions and populations most affected to developments in research, prevention, and treatment to the human rights challenges around the world that create barriers to treatment and services — and then refine the focus of our grant awards so we invest our funds where they can be most effective.

DF:  So much has changed in terms of the prevention and treatment resources that can be deployed to reduce the incidence of HIV. Back when the Foundation was established, there were no effective treatments available; today there are many, and now we even have PrEP, a once-per-day pill to prevent HIV infection.

Yet, in many ways the challenges and hurdles we faced in the early 1990s are the same problems and barriers we face today. AIDS is still very much a disease of poverty, a disease of willful neglect, a disease of stigma and discrimination, and a disease of hate. Where people are made to feel shunned, hated, condemned, or even criminalized based on the colour of their skin, the religion they profess, the person they love, the gender they were born with or adopt, there AIDS will continue to thrive. How can people seek out the health information or the treatment they need when they fear for their lives? How can they obtain that treatment when the costs of medications and health insurance are outside their budget because employers don’t pay a living wage?

The Elton John AIDS Foundation was established upon the singular principle of unconditional love. This disease exists because our society finds it awfully easy to turn its back on people who are “different” and people who are in need: the LGBT community, sex workers, drug users, prisoners, the poor, and the uneducated. We will only end this disease when we can find it in our hearts to love every human being on this earth. Because once you can do that, the barriers to prevention, treatment, and care will melt away.

MP What are some key organizations, projects and initiatives EJAF is currently funding in Canada?

EJ: The Elton John AIDS Foundation has actually funded work in Canada for decades. Since 2012, we’ve provided more than $500,000 to over a dozen groups. Just this past year, we’ve funded three organizations in Canada working on projects related to HIV and refugees, efforts to address unjust use of sexual assault law to target HIV-positive people for having consensual sex, and a project engaging sex workers in the development of a program providing them with medications that prevent HIV infection.

We’re very proud of the grants we’ve awarded in Canada over the years, and we’ll certainly continue to provide funding to Canadian organizations doing cutting-edge work, especially for HIV-related issues in the fields of social justice and human rights.

DF: One of the Canadian grantees we funded in 2014 – the International Human Rights Program at the University of Toronto — is releasing a very important report shortly on human rights abuses in Mexico against people living with HIV, as well as LGBT people and other marginalized populations who are at greater risk for HIV infection. Currently, Mexico is on Canada’s safe list regarding immigration, which makes it more difficult for people fleeing human rights abuses in Mexico to apply for asylum in Canada. At EJAF, we believe holding governments accountable and building systems to protect rights and improve lives are central to ending the AIDS crisis, and we’re very proud of the important work the International Human Rights Program is doing in this field.

Elton John is the founder of the Elton John AIDS Foundation. David Furnish is the Foundation's Chairman.