News about Friend Grief and AIDS

It’s that time of year again! 

I’m pleased to announce the 2015 update of Friend Grief and AIDS: Thirty Years of Burying Our Friends.

Each year about this time I update the resources and statistics in my book. That's one of the advantages of publishing today - nothing ever has to be out-of-date.

You can find the updated ebook on Kindle, Nook and Kobo. The updated paperback will be available in about a week.

If you have a previous version, just go to the AIDS UPDATE page here for new information on the epidemic.

And as always, 25% of the retail price is donated to one of my favorite organizations in the fight against the epidemic: Broadway Cares/Equity Fights AIDS.

National Women and Girls' HIV/AIDS Awareness Day

I was on staff at Chicago House when we opened the city’s first hospice for people with AIDS in January, 1990. At that time, there was only one funeral home that would accept the bodies. Nursing homes and stand-alone hospices refused anyone dying of AIDS. Sympathy was extended only for those who contracted the virus in a way that defined them as “innocent victims”: blood transfusions or birth.

It was a beautiful old house near the lake shore, donated to our organization. The doctor who lived next door was opposed to it, but once he understood that people would arrive in an ambulance and leave in a hearse (unlike crowds lined up for the overnight shelter he imagined it to be), he calmed down. No record exists of how adamantly he opposed the drug house across the street.

The hospice had room for five people, and when we welcomed the first group, the room on the first floor, to the left of the front door, was occupied by a woman of color.

She’d been infected with AIDS by her husband, an IV-drug user, and though he was somewhat healthy, she was dying. She despaired of what would happen to her children, who would be left with her husband and later, presumably, foster care. As I recall, there were no family members willing or able to step up and ease her mind. Later, a friend of mine would start a stand-by guardianship program for women with AIDS – similar to open adoption – that would’ve allowed her to choose a family for her children, reducing her stress and giving her a little peace. But that happened too late for her.

Over thirty years since the start of the epidemic, AIDS is still looked at by many as a disease of punishment: for being gay, for being a drug user, for being promiscuous, or all of the above. But AIDS has always behaved like any other virus: it doesn’t discriminate.

From the beginning, there were services directed to gay men (still disproportionately affected by the epidemic); few focused on women. It was a sad joke in the old days that “women don’t get AIDS, they just die from it.” That’s because until the women of ACT UP waged a fierce campaign to change the definition of how the virus presented, women with AIDS weren't properly diagnosed.

In 2015, there are great advances in both treatment and prevention, but for many women, they are not practical or affordable. Women may be in abusive relationships or in a culture where they are not allowed to insist on using protection during sex. They may not have access to effective prevention and treatment. Or they might just feel uncomfortable walking into a clinic with “gay” in the title.

Human nature being what it is, there are always those who believe they are invulnerable to any consequences, particularly when it comes to unprotected sex. That explains why AIDS and other STIs are on the rise among senior citizens: when unplanned pregnancy is no longer a threat, the effort to prevent sexually-transmitted infections fades.

Luckily, there are organizations that are doing remarkable work to address the vulnerability of women. One of my favorites is The Red Pump Project, which focuses on educating African-American women on the options available to them. Fully 84% of new infections among women are through heterosexual sex. And even in 2015, a woman in the US is infected with HIV every 47 minutes.

I know a number of women who are long-term survivors, but I don’t know many women who died of AIDS. That woman at Chicago House was the first, and it had a profound impact on me. Anytime someone passed judgment on a gay man for being infected, I called them on it with the proof that the virus doesn’t discriminate. You can’t have it both ways: you can’t say it’s a punishment for some and not for others. A virus is too stupid to pick and choose.

So today, I hope you’ll check out The Red Pump Project and other organizations in your community that are reaching out to women, particularly women and girls of color, at risk for infection. There’s a lot of stigma attached to AIDS – still. But it can be eliminated with education and awareness. Find out how you can help yourself and your friends. 

And #RockTheRedPump.

World AIDS Day 2014

Today, December 1, is the 27^th annual observance of World AIDS Day.

Since that first year, when I dropped a few pounds in the collection can at the curtain call of a play in London, I’ve marked the anniversary.

The second year I coordinated a fundraising event. Some years I went to a special Mass or memorial service. Other years I simply made note of it and went about my business.

This year I’ll be part of a reading and panel discussion at Women & Children First bookstore in Chicago about the generation gap in the AIDS community. This reflection on Huffington Post last week will give you an idea of what that means in terms of fighting the epidemic.

The theme for World AIDS Day this year is “Focus, Partner, Achieve”.

This year the epidemic looks like this:

            1.2 million people in the US are living with HIV; 14% don’t know they’re infected.

            The annual number of new infections has held steady for 10 years: 50,000/year.

            13,000 people with AIDS in the US will die this year.

The African-American community – particularly men who have sex with men – is disproportionately affected.

So, how do we follow the theme for this year?

Focus:              Target education and prevention efforts to the communities most at risk: African-Americans and young people 13-24

Partner:            Work with faith communities, schools, government agencies and nonprofit organizations to reach those communities.

Achieve:          Make an AIDS-free generation our goal.

What does all that mean?

It means that 30+ years into the epidemic, there’s a hell of a lot of work to do, in the US and around the world.

It means we have to reach out to make sure that every conversation- whether it’s about education, affordable housing, access to healthcare, affordable medications, anti-discrimination laws, aging – includes a recognition of how those issues impact people living with HIV, and those at risk of infection.

There is no cure. There is no vaccine. But unlike the early days, we have powerful tools: scientific knowledge, antiretroviral drugs, PReP (Truvada, which can effectively protect against infection).

That’s where reaching out to partner with others is important. The drugs won’t help you if you don’t know about them. They won’t help if you can’t afford them. It’s hard to keep to a regimen if you’re living in a homeless shelter. Unpredictable health won’t help you keep a job.

We’ve come a long way in 30+ years, but there is such a long way to go.

And I for one would like to see a day when, on December 1, people have to be reminded of what the world was like before AIDS was eradicated.

And the only way we do that is by working together, every day.

For more information on HIV, AIDS and what you can do to help:

www.AIDS.gov

www.amfAR.org

www.housingworks.org

www.actupny.com

www.ejaf.org

Avoiding Grief at Work

He looked great in a tux, too

I’ve been working hard lately on the next book in my series, Friend Grief in the Workplace: More Than an Empty Cubicle. But I struggled to find some validation about the importance of friendships at work.

There’s plenty of anecdotal evidence: stories you’ll read in the book. What I wanted was something more objective. Maybe I needed to conduct my own survey, a daunting prospect I was not prepared to seriously consider. So I ignored the issue for a couple days. As luck would have it, just such a survey presented itself yesterday morning.

You’ll learn more about the survey results in the book, but one of the obvious truths in it was the evidence that we are happier when we’re friends with our co-workers. Whether you love your job or hate it, sharing the experience with others makes our lives a little less stressful. Celebrating promotions, commiserating over a nasty boss, working on a project together: all are enhanced by friendship.

When I worked in the AIDS community of Chicago in the late 80s/early 90s, I did my best to not make friends with co-workers. It’s not that they weren’t nice people (though some weren’t). I knew their HIV status, and back then, being HIV+ was essentially a death sentence. I was never afraid of them or dismissive of them (though I did worry about my assistant’s ability to complete some of the more physical tasks of his job). But I was afraid of getting close, of making friends with someone I spent at least 10 hours a day with, someone I would certainly outlive.

I’m embarrassed to say I’m grateful that Steve and I were no longer working together when he died. To this day, he remains one of the sweetest, kindest, most thoughtful men I’ve ever known. And while I was glad to visit him, enabling his partner to take a brief break from caregiving, I knew I would not have wanted to watch his decline every day at work.

Despite my best intentions, I did wind up making friends with some of the people I worked with then, though most of them were volunteers who  were not around all day, every day. I’m still friends with some of them. We rarely talk about that time, because if we do, we inevitably find ourselves sharing a story about Steve or Ernest or someone else who’s been dead now for decades.

Am I sorry I didn’t make more friends at work? I’m surprised to admit I am. There were people I knew in the community – not actually in the office – who I only knew a little. We weren’t friends by any definition. But I regret now that I didn’t take the time, didn’t put aside my own fear of losing them. There’s no question that my grief would’ve been greater when they died. But my work life would’ve been a hell of a lot richer.

Veterans in the War...Against AIDS

Last night I attended an emotional event at Gay Men’s Health Crisis, in commemoration of National HIV and Aging Day (September 18). “We Aren’t Dead Yet! What Do We Do Now?” was billed as a community discussion, with an impressive panel of experts: Dr. Judith Rabkin, Columbia University Dept. of Psychiatry and Dr. Perry Halkitis, professor at NYU and author of The AIDS Generation: Stories of Survival and Resilience spoke along with two long-time HIV+ survivors, Jim Albaugh and Kevin Oree, and my friend Jim Eigo, long-time HIV- survivor and fellow ACT UP NY activist.

The event was held in order to get feedback on the kinds of support and services needed by this often-forgotten, often-stigmatized group of people in my age group.

(A couple of asides: First, I like the use of long-time versus long-term. Second, although some may disagree, I do not consider myself a long-time survivor. Like Jim Eigo, I’m HIV-, and though I was involved in the community in the 80s/early 90s, I still see myself as an outsider. I consider myself an ally, nothing more, nothing less.)

The needs were many and varied: from the long-term effects of powerful anti-retroviral drugs, to the stigma felt by gay and straight long-time survivors, to the generational disconnect felt on both sides. Those who did not expect to live to see their 25^th birthdays are now facing common aging issues complicated by their HIV status.

But the most emotional moments, at least for me, came from those who strongly identified the most serious issues facing older AIDS survivors as loneliness and isolation. There is an overwhelming need for grief support groups for those who only now – 30+ years into the epidemic – are finally beginning to confront the losses of dozens and even hundreds of their friends.

They delayed their grief because they had to: they had to take care of themselves and their friends, they had to fight for basic rights of housing and health care, they had to fight a war – no time to enjoy the luxury of grieving dozens of friends.

In the title of this post, I used the word “veterans”. I did not use it lightly. It was deliberate.

There are striking similarities between those who have been affected by AIDS and those who have served our country in the military. Both groups suffer from survivor guilt, risk of suicide, complicated health issues and stigma. Both groups have kept their experiences to themselves, only willing to talk about the war many years later. Both share strong support communities even while battling crippling loneliness.

Imagine if the war in Vietnam or Iraq or Afghanistan had dragged on for 30 years, with no end in sight. That’s what it’s like to be a veteran of the war against AIDS. Sometimes it feels like you’re winning, sometimes you feel like you’re losing. Sometimes you’re on the front lines, sometimes you’re sent back for a brief furlough before redeploying. Maybe you mustered out. But the war goes on.

I never envisioned a day when we would need to address the aging issues of men and women who are HIV+. And it’s not just long-time survivors: in this article from the CDC, we Baby Boomers (of whatever sexual orientation) are becoming infected even now. Safe sex is not a topic of discussion at most retirement communities.

And that’s why I challenge the AIDS community – in cities, suburbs and rural areas – to hold listening sessions like the one I attended last night, to determine the services needed by those aging with HIV. And to provide grief support – individual therapy, groups, and online resources – to help them process the grief for their friends that is only now rising up, and give them some measure of peace.

"Body Counts" by Sean Strub

I’m not a fan of memoirs. I find a lot of them to be self-serving justifications for past behavior, spinning a fictional tale that presents the narrator as either a victim or hero. And while AIDS is an issue I’ve been involved with since the 80s, Sean Strub’s Body Counts was not a book I was excited about reading.

Strub changed my mind on page 2, when he mentioned that a mutual friend, Jamie Leo, dressed as a priest at ACT UP’s controversial 1989 St. Patricks’ Cathedral demonstration. My mind flashed back to a Halloween party Jamie and I had attended in the mid-70s, and I now found myself connected to Strub’s story in a way I hadn’t anticipated.

Body Counts is the not the story of a victim or even a hero. It’s the story of a man at a unique time and place, a man with personal demons and challenges he used to fuel a quite remarkable life.

A native of Iowa City (where I went to college), Strub’s interest in politics takes him to Washington in the late 70s, a good time for liberals. His growing awareness of being gay – and the ways his early, as yet unacknowledged, sexual abuse play out – occurs in a gay community still largely closeted. That immersion in politics led him to a career in direct mail fundraising for gay issues. His move to New York coincided with the discovery of a new, strange, and frightening virus that targeted gay men.

Not all of us involved in fundraising for AIDS organizations in the 80s wound up as activists, but Strub did, bringing those talents and contacts to ACT UP. But it wasn’t until the death of his lover, Michael that Strub’s life took an irrevocable turn. That morning at St. Patrick’s was – at least for me – the moment the Catholic boy from Iowa became an activist. From then on, his commitment to the community took on a much deeper meaning. He was fighting for his friends, for Michael, and for himself.

He’s not shy about naming names (though it doesn’t come off as name-dropping), and his anger is well placed: politicians like Bill Clinton who conned the LGBT and AIDS communities, making promises on the campaign trail that translated to indifference, at best, once elected; gay advertisers, who abandoned Strub’s Poz magazine because it was geared to anyone with HIV, not just privileged, white, gay men; Anthony Fauci of the CDC, who time and again declined the opportunity to support people with HIV/AIDS rather than the status quo of government bureaucracy. Too many times – whether it was politicians, religious leaders, even members of the LGBT community – access did not translate to support. And facts did not always sway those in power.

And that’s the strong suit of his book, which should be required reading for anyone who doesn’t remember the first 20 years of the epidemic (and even those of us who do). By starting out in Washington, then moving to New York, just in time for the outbreak of HIV, Strub’s life connects the dots in a unique way I have not seen anywhere else. If at times it feels like he’s a witness to history, he is.

But more importantly for all of us, he’s a participant. He’s an integral part of the history of the AIDS epidemic, especially in New York. And if he insists his reasons were selfish – to create a legacy larger than himself – so be it. His new cause-within-a-cause (HIV criminalization) puts him once again in the position of advocating for people on the margins, even within the AIDS community.

He does not, thankfully, gloss over his own failings. None of them – denial about his own health, assumptions about people in power – are unique to Strub or gay men or anyone who is HIV positive. They’re human failings. By his own admission, he’s luckier than a lot of people, especially when it comes to health and finances. He lived long enough to benefit from the “cocktail” of anti-retroviral drugs that created the “Lazarus Effect”, bringing back thousands from the brink of death to now-health lives.

I was amazed at how many ways our lives brushed up against each other, unknowingly: mutual friends, identical reactions to moments in history, being in the same place at the same time. And once again, I was touched by the acknowledgement of the role of friends in the history of the AIDS epidemic. That always has been the real heart of every story: how friends stepped up and became caregivers, activists and leaders in the fight against bigotry and fear.

Over the years, I’ve read dozens of books about AIDS (wrote one, too). All have left me sad, frustrated and angry. But no book has left me with such a profound sense of gratitude and peace as Body Counts. And that’s a remarkable thing.

Early in the book, Strub shares a letter from activist Vito Russo that encourages him to do something we should all take to heart:

“This is not a dress rehearsal,” he wrote to me in August 1981. “It’s your one and only life, and you have to make it something right now, you do not have all the time in the world, it only seems that way. End of wise comment.”

 

 

 

Update on Friend Grief and AIDS

One of the benefits of self-publishing is the ability to revise your books at your discretion.

The second book in my series, Friend Grief and AIDS: Thirty Years of Burying Our Friends, has been well-received. It recently earned a 5-star review on Readers Favorites and continues to generate impassioned – and positive – reviews on other sites.

When I wrote it a year ago, the statistics and resources in the back of the book were current. Time for an update.

Around March 1, I will re-release Friend Grief and AIDS with:

• Updated statistics on HIV and AIDS around the world
• Additional books and films for those who are interested
• More links to organizations devoted to education, prevention, treatment and advocacy

If you have already purchased a copy, or plan to purchase one before then, thank you! I will post that updated information as a free pdf on the Resources page here in early March. That way those of you with the original book can see what’s new.

An added note: that new version is a reward for a Kickstarter campaign happening right now. The Last One is a documentary about the AIDS Quilt:

Stigma isn’t silent. Whether it’s spoken at the pulpit or spoken under one’s breath, in political rhetoric or private conversation, it is loud. It is insidious. It is lethal.

In The Last One: The Story of the AIDS Memorial Quilt, we follow the AIDS Memorial Quilt from inception to the present day to uncover how stigma has fueled the growth of the greatest pandemic in human history.

So, that’s what’s going on right now with Friend Grief and AIDS. If you haven’t read it yet, I hope you will – either now or when the updated version is released. Whether you remember the dark, early days of the epidemic or not, I think you’ll find the stories in the book both disturbing and inspiring.

This Year – and Next - in Friend Grief

Those of you who have been following my blog for a while know that this has been quite a year. I think we all have the tendency to look back in late December, and cringe at the thought of all we’d planned to do but didn’t. I started to do that not long ago, but had to stop myself.

I was looking at only one part of my goals for this year, and in that category I definitely came up short: I self-published three books instead of six. Yeah, I know, I was a bit too optimistic. But what surprised me more than anything was what I accomplished that was not on my list. And I’ll tell you right now, most of these things were not anything I planned on:

1.      Published three books: Friend Grief and Anger: When Your Friend Dies and No One Gives A Damn; Friend Grief and AIDS: Thirty Years of Burying Our Friends; Friend Grief and 9/11: The Forgotten Mourners.

2.      Kept this blog going, as well as my Facebook, Twitter, Pinterest, Google+, LinkedIn and Goodreads accounts.

3.      Appeared on blogs such as DIY MFA, The Writer’s Guide to E-publishing, Choices, and Memoir Writer’s Journey.

4.      Became a Huffington Post blogger

5.      Did my first blog talk radio show (you can listen here.)

6.      Reviewed a dozen books for BroadwayWorld.com.

7.      Participated in Printers Row Book Fair and Chicago Book Expo, as well as the annual ADEC (Association for Death Education & Counseling) Conference book fair.

 

 

Along the way, I met some remarkable people. Some of them were people I interviewed for my books. Some of them were personal heroes, like the guys who started ACT UP in 1987.

And while a recurrence of symptoms from my concussion four years ago was not in my plans, the forced slow-down (which you probably noticed from my less-frequent posts for the past couple months) has given me a chance to catch my breath.

What can you expect from Friend Grief in 2014? More. A lot more:

1.      Three more books in the Friend Grief series. One is on the military; one on grieving friends you work with. The final book will be stories of people (like me) who made major life changes at the death of a friend.

2.      More posts here and on all the social media sites listed above.

3.      More book reviews here and on BroadwayWorld.com.

4.      More blog posts on Huffington Post.

5.      More terrific guest bloggers here talking about how they faced grieving a friend.

6.      More related content, like free lesson plans/discussion guides for all the Friend Grief books.

7.      A completely redesigned website.

 

I couldn't have done it all without you, my readers. Your comments - on and offline - have kept me going when I was most frustrated. You are in my thoughts every time I sit down at the computer. I appreciate your support more than you know.

And believe it or not, I already know what comes after those next three Friend Grief books.

But you’ll have to stick around to find out what else is coming. J

See you next year!

 

World AIDS Day 2013

In his November 4 review of Time Line Theatre’s revival of The Normal Heart, the Chicago Tribune’s Chris Jones attempts to put the play in historical context: “AIDS is no longer a death sentence.” If only.

While it is true that those newly diagnosed are not given a prognosis of, say, thirty days (like Ron Woodroof in Dallas Buyers Club), in the fourth decade of the epidemic, there is still no cure and no vaccine.

According to the Joint United Nations Programme on HIV/AIDS (UNAIDS), new infections are on the rise in Eastern Europe and Central Asia: 13% since 2006. In the past 12 years, new HIV infections have doubled in North African and the Middle East. Worldwide, 1.6 million people died from AIDS last year.

But, that’s not us, right? That’s not the demographic so powerfully depicted in Larry Kramer’s play. Except it is.

The Centers for Disease Control reported this year that there was a 22% increase in new infection among young gay/bisexual men in the US between 2007 and 2010. They estimate that this will translate to 1 in 2 young gay men becoming infected by the time they reach the age of 50.

According to a December, 2012, report from the Chicago Department of Public Health, the city’s infection rate for gay African-American men is 35%; gay white men 16.8 percent; gay Hispanic men 12.5 percent.

As my friends in ACT UP know all too well, AIDS is not history.

And, as I knew 30 years ago, when I began volunteering, donating and raising money in the AIDS community in Chicago, everyone is at risk. Young straight women are now relying on apps to tell them when it’s “safe” for them to have unprotected sex. They define “safe” as avoiding pregnancy, without considering the risk of being exposed to HIV or other sexually-transmitted infections. Older straight women, past menopause, feel no need to use a condom because they can’t get pregnant.

There is a frightening level of denial out there. Some of it is ignorance: when we limit sex education in schools to abstinence-only, we can’t be surprised that people have incorrect assumptions about HIV transmission.

More troubling, at least to me, is the attitude that Jones alluded to: AIDS is not a death sentence. A generation has grown up being told that AIDS is “no big deal”. It’s “like having diabetes”. It’s a chronic disease – just take a pill every day and you’ll be fine.

A recent study by Case Western Reserve University of HIV positive gay men found that “those younger than 50 suffered from greater disconnection from family and friends than the older cohorts. HIV stigma played a major role; the peers of the younger group apparently don’t identify as well with someone who is living with a chronic condition. The blame game is also at play: Young people with HIV may feel that others both fault them for acquiring the virus and try to avoid them because they perceive them to be sick.” Those who are over 50 tended to have stronger support networks.

I don’t long for the “bad old days”, when memorial services and fundraising events constituted most of my social life. But the immediacy of the crisis created a sense of community that is largely gone. Other issues have stolen our attention. Our lives went on, even if those of our friends did not.

The 26^th annual World AIDS Day is December 1. The theme this year is “Shared Responsibility: Strengthening Results for an AIDS-Free Generation”.

Shared responsibility, to me, begins with the widespread dissemination of accurate information on HIV/AIDS prevention and treatment: in schools and colleges, bars and homeless shelters, clinics and churches. There is shocking ignorance, particularly among young people, of their options for avoiding infection (not just condoms, but PrEP) and emergency treatment after possible infection (PEP).

Education is just the start. Funding has leveled off or declined at the federal, state and local levels: not just for prevention and treatment, but for the complicating issues of poverty, homelessness, drug abuse, mental health. Those issues represent high-risk populations that are not getting the focus they deserve.

For those living with HIV/AIDS, there is a need for more effective coordination of services: food and housing, medical treatment, mental health or drug counseling, employment, peer support. And now, thirty-plus years after the beginning of the epidemic, we have a new demographic we never anticipated: long-term survivors.

I have friends who were diagnosed in the 80s, who, thanks to the introduction of anti-retroviral medications in the 90s, are alive and reasonably well. But their HIV status – along with the previously unknown long-term effects of these powerful drugs – creates new issues for an aging population.

Over 1.1 million Americans are living with HIV/AIDS. It’s estimated that almost 20% don’t know they’re infected because they haven’t been tested. Even now – over thirty years after the first documented cases – we see 50,000 new infections a year: more than the number of people diagnosed each year with ovarian or pancreatic cancer. And people are still dying, so yes, AIDS can still be a death sentence.

If we truly believe in shared responsibility, then it is up to us to change that. Move AIDS education, prevention and treatment to the front page. Get tested and educate yourself first, and then spread accurate information to others. Demand increased funding at all levels of government. Volunteer for an AIDS-service organization. Join PFLAG or ACT UP. Include HIV and AIDS in any discussion about poverty, drug abuse or healthcare.

The title of Elton John’s memoir is Love is the Cure, and it’s true. Until we eliminate the stigma surrounding HIV/AIDS, until we embrace groups of people with whom we may have little in common, until we pull together, there will be no AIDS-free generation, here or anywhere else.

I have a daughter, niece and nephews who have never known a world without AIDS. But if we can find that sense of community again, if we can commit to widespread, accurate education about HIV/AIDS and take care of those already infected, then maybe, just maybe, their children will finally be able to say “AIDS is history.”

 

 

To learn more about HIV and AIDS prevention and treatment, click here.

For information on ACT UP, and what you can do to work towards an AIDS-free generation, click here.

 

How to Help A Friend Who’s Dying

Since I saw Dallas Buyers Club (my review here) I’ve been doing a lot of thinking. Although the main character, Ron Woodroof, is initially focused only on his own survival, eventually the people he helps – especially Rayon – become friends. He is literally helping them stay alive. And that got me thinking: what would I do?

Sometimes what we are called upon to do, what we are able to do, seems insignificant: running errands, chauffeuring to doctor’s appointments, cooking meals. All serve a dual purpose: taking the burden of the mundane off the shoulders of someone who needs to focus all their attention and energy on fighting their disease, and also to provide a tangible example of friendship.

Not everyone’s good at asking for help, and those who are dying may be less likely. They don’t want to see ‘the look’ that we often unwittingly wear on our faces: a mixture of sympathy and pain that they’d never seen before.

But those of us who are lucky, really lucky, are allowed in to what my friend Delle called “the cancer vortex”. It may not be cancer that is killing our friend, but you get the idea. Reality has changed for your friend and for you.

What, then, are you willing to do? I don’t mean “call me if you need anything”. You’ll grow old and grey before you get that call. I mean what are you willing to actually do for them? Depending on your proximity and available time, there are many things:

-          Set up a Caring Bridge page or Facebook group to keep other far-flung friends up-do-date on their progress.

-          Schedule regular trips to the grocery store. Take them with you if they’re able.

-          Make a date for lunch or brunch, depending on their energy and appetite.

-          Do something stupid together that will make you both laugh.

-          Ask old friends to contact them.

-          Make their favorite foods, especially if their appetite is waning.

-          Do their laundry, or clean for them.

-          Don’t whine. Do your best to keep their spirits up. This isn't about you.

-          Send cards, DVD’s, packages; burn a CD or Skype..

These are all tasks that most people are capable of accomplishing. But what if the situation is drastic? What if, like Ron Woodroof, their doctor gives then 30 days to live? What would you do then?

-          Would you go public for them?

-          Would you steal for them?

-          Would you break the law for them?

I’ve had this conversation with several friends in the past few years. So far, what we’ve pledged to do has been without concerns about legal ramifications (I mean, really: does it matter if the marijuana is officially medicinal?).

I hope one of the conversations that comes out of Dallas Buyers Club is just this: what would you do for a friend who’s dying? Would you let your own fears or prejudices or disapproval stop you from supporting them? Or would you do whatever you could (and hopefully get away with) to help prolong their life, improve the quality of their life, or help them die as peaceful a death as possible?

Because I guarantee if you don’t, you won’t just feel guilty.

You’ll wonder what your remaining friends would do for you.

"Dallas Buyers Club"

Matthew McConaughey (Focus Features)

“You’ve got 30 days.”

To live.

We’ve just met Ron Woodroof, an electrician and rodeo cowboy, who seems to spend an equal amount of time getting drunk and having sex. Suddenly ill, he finds himself in the hospital, being told what was unthinkable for a straight man in 1985: he was HIV positive. “Get your affairs in order,” the doctor tells him. He doesn’t. Instead, his crash course in research about AIDS makes him the most unlikely – and initially, unlikeable - cinematic hero you will even encounter.

Based on a true story, Dallas Buyers Club recounts with great authenticity a moment in history. Rock Hudson had just died. Tens of thousands of non-celebrities had died of AIDS. ACT UP hadn’t been formed. It would be three years before President Reagan actually said the word “AIDS” out loud. It was five years into the epidemic, and there was no known effective drug to treat those who were infected. Most people still believed only gay men – and IV-drug users – were at risk.

Woodroof, played by Matthew McConaughey, is scammed by a hospital employee who for a time sold him AZT – only available to those in a clinical trial, and even then, only to those who weren’t unknowingly getting a placebo. But he refers Ron to a doctor in Mexico. There he finds alternatives to AZT not available in the US because they hadn’t been approved by the FDA. That didn’t mean they weren’t effective – just not approved (so they were technically illegal). But when given a month to live, those are details easily ignored.

Jared Leto (Focus Features)

It doesn’t take long for Woodroof to realize that there was money to be made in the gay community. But someone that obviously homophobic couldn’t make headway. Enter Rayon, a transgender woman played by Jared Leto, who is in the clinical trial. Together they start a “buyer’s club”, where AIDS patients pay a monthly fee and receive all the drugs they need. Technically – an argument the FDA and IRS don’t agree with – he’s selling memberships, not illegal drugs.

The AIDS epidemic made advocates of unlikely people, and Ron Woodroof was one of the most unlikely. He did not live 30 days. He lived seven years. Other buyer’s clubs sprang up in New York and San Francisco, among other cities, though they tended to be nonprofit organizations. There was nothing nonprofit about the Dallas Buyers Club. And Woodroof didn’t stop at Mexico. He traveled to Amsterdam and Tokyo and wherever there were drugs that could help him and his members.

To understand the panic, you have to realize the perfect storm of 1985. The FDA demanded clinical trials where half of the patients got placebos, effectively sentencing them to death. It could take ten years to work through the bureaucracy before approval. Only AZT was “available”, though there were other drugs (like those Woodroof acquired) that could be purchased over the counter in other countries. Once diagnosed, a 30-day life expectancy was not uncommon. Those known to have AIDS frequently were fired  from their jobs and lost their homes, which happened to Woodroof.

I attended a screening with other members of ACT UP. None of us knew what to expect. But I found myself nodding my head at times: characters who were afraid to touch Ron, suspicion and misinformation, unsympathetic doctors more committed to drug money than their dying patients. I remembered it all too well.

Director Jean-Marc Vallee does a terrific job of taking us back to that moment in time: the irrational fears, the bigotry, the governmental indifference, the entrenched medical community. And his film confirmed something I said in my book: that the story of the AIDS epidemic would be about friendship. Ron and Rayon are the oddest of friends: joined by a health crisis that neither could’ve predicted, slowly putting aside their own prejudices to help themselves and others.

Matthew McConaughey and Jared Leto both give Oscar-worthy performances, and Jennifer Garner does well as a doctor who gradually comes around to Woodroof’s side.

Dallas Buyers Club is a powerful, deeply moving film that will move you and possibly offend you, too (especially if you don’t like hearing the F word). But it may be the most important movie of the year. It opens in select cities on November 1. Don’t miss it.

 

To watch a trailer or behind-the-scenes video of Dallas Buyers Club, click here.