Today, December 1, is World AIDS Day. According to the CDC, an estimated 36.9 million people are living with HIV/AIDS worldwide. Globally, more than 15 million people are on anti-retroviral therapy, and new HIV infections have fallen 35 percent since 2000.
But before AIDS had a worldwide awareness day, Presidential proclamations, and a big red ribbon, it was feared. It was spoken of in hushed voices, and some people denied its existence entirely. Its victims were scorned and sometimes even disowned by their families. There was misinformation, prejudice, and, as there still is today, no cure.
Enter hospice. The movement was just getting started in the US, but found itself on the front-lines of the AIDS pandemic. When the AIDS epidemic was raging and those afflicted became social pariahs, medical professionals had no cure or course of treatment to offer. Hospice stepped in to do what they could. Hospice was founded on the principle that the dying process is a part of the normal process of living and that, through appropriate care and the promotion of a caring community sensitive to their needs, individuals may be able to find peace and comfort in preparation for death.
It was a very scary time, says J. Donald Schumacher, President and CEO of NHPCO. NHPCO did not exist yet, and at the time, Don was the CEO at The Hospice at Mission Hill in Boston, MA. I was so proud that hospices refused to abandon their patients, even though many were abandoned by friends and family who feared the disease. Hospice workers faced down the fear to provide care, comfort, and peace to patients in their darkest moments. That is what hospice is all about: providing care when and how the patient needs it, regardless of who they are, where they re from, or what they re suffering from.
While the global AIDS epidemic receives worldwide attention and funding today, those original patients and their caregivers lived, worked, and died in the shadows. It is worth a moment today to acknowledge the approximately 39 million people who have died of AIDS since the 1980s, and the approximately 36.9 million people living with the disease today. But today we also thank the caregivers past, present, and future who overcame fear and ignorance to care for those who needed it most.
This month marks the 30th anniversary of the discovery of HIV, the virus that causes AIDS. Today, AIDS funding and prevention take up a sizeable chunk of the NIH’s budget, and the public is very well informed about the issue. While HIV/AIDS is still a large problem in America, there are now policies in place that are dedicated to providing treatments and preventions to the largest possible group of patients.
Not bad for a health issue that nobody knew existed in this country 30 years ago.
I think it’s interesting that the HIV/AIDS movement has come so far- don’t get me wrong, I know how much further there is to go. But the United States went from not knowing what HIV/AIDS was, to having over 158,000 people contract the disease in the 1980’s per year, to incredible fear and paranoia that actually gave way to a much better understood public health problem and full force initiatives combating the issue today. While HIV/AIDS is still present, the fear and uncertainty about how it’s contracted, who can get it, and the drugs and practices that can mitigate its effects have come a very long way in 30 years.
I recently read a report that my co-worker Gail forwarded on to me produced by the advocacy group Faster Cures, titled ‘Back to Basics: HIV/AIDS Advocacy as a Model for Catalyzing Change.’ It outlines the history of the HIV/AIDS advocacy movement and the advocacy initiatives that were successful in changing health policies on the national level. While I’m the first to admit that there are huge differences in the advocacy goals between the HIV/AIDS and hospice communities, I took away three things from the report that I think apply pretty closely to what we’re trying to accomplish with the Hospice Advocacy movement.
Education is Key. The report stresses how important education is- both the level of knowledge an advocate has about the issue and how well advocates are able to pass on this knowledge to decision makers, elected officials, and regulators. Misconceptions were rampant in the early days of HIV/AIDS, and it’s something we also struggle with in the hospice community. Whether it is media hype around advance care planning consultations or the fact that hospice is still viewed by many to be a place in their community where people go to die, there continues to be an information void on hospice and end-of-life care.
As advocates, we have a constant duty to educate those in our wider social circles to the true hospice philosophy. The HIV/AIDS movement has done a great job in dispelling myths and misconceptions about how AIDS is contracted, and we can learn a lot from their educational campaigns.
Personal Passion. Those who are able to capture their passion and channel that energy into a movement produce measurable results. From the report: ‘HIV/AIDS activists were masterful in their ability to utilize the media and demonstrations to put a human face on the disease’ (p 12). While the hospice advocacy movement doesn’t exactly comprise itself of the same folks who were a part of aggressive AIDS advocacy groups like ACT UP, we share their passion in a different way. The stories we tell about hospice are profound. HAN’s video testimonial program is filled with personal stories of grace in the face of tragedy- these stories are relatable to everyone in some way, and the passion relayed is unmistakable.
This is something we need to keep doing within the Hospice Advocacy movement- hospice comes into a family’s life and touches them forever. To ensure that hospice is available to all going forward we need to grow our ranks of advocates who have a passion for the services hospice provides.
Community. The HIV/ AIDS advocacy movement fostered a real sense of community amongst its members. ACT UP would sponsor daily meetings for those affected by the disease, and provide forums for education. They made people feel like they belonged to something bigger than themselves, and that those people were helping. The HIV/AIDS advocacy movement wasn’t top down- it was grown locally and was about more than lobbying Congress. The Hospice Advocacy movement can learn a lot from this- hopefully you’re reading this because you have a true passion for the services hospice provides. HAN has tried to foster a sense of community among its advocates- we post pictures on Facebook and ask questions of our Advocates as to why they work in the hospice field. The answer to these questions rarely has to do with salary or convenience- the responses we get from our impassioned Advocates is that they have a connection to hospice because it’s changed their lives in some way, and they want to give back to something that has given them so much. That’s our community, and we need your help to make it grow even bigger.
Hospice and those suffering from AIDS have long shared a certain kinship- patients suffering from HIV/AIDS were able to find relief and comfort in hospice care. When there were no answers, at least hospice could ease the burden on families and friends in the final months or weeks of life. I say that we should continue our close kinship with the AIDS community by learning from their successes, understanding our similarities and differences, and working hard to create an advocacy movement that they would be proud of.
Note: Originally, this post listed the advocacy organization Faster Cures as the source of the report. The report was co-authored by HCM Strategists of Washington, DC.