by Sue Saltmarsh
Over the course of the almost five years it’s taken for implementation of the most anticipated provisions of the Affordable Care Act (ACA), we’ve learned many new terms—individual mandate, medical loss ratio, high-risk pool, essential health benefits, to name just a few. And we’ve also heard about “cherry-picking,” the practice of insurance companies to reject the elderly and already-sick in favor of insuring the “cherries” - young, healthy people. They used to do this by rejecting those of any age with “pre-existing conditions,” by creating disparities between men and women, and by dropping people when they got sicker or had a medical crisis.
The ACA has supposedly outlawed those criteria and made up for that kind of cherry-picking with the individual and employer mandates which make it necessary for every person to have health insurance and every employer with 50 or more full-time employees to provide coverage for them.
But wait! In July 2013, the employer mandate was “delayed,” thanks to businesses complaining so much about the cost of insuring their employees. So the reports of employers cutting employees’ hours so they’d only be part-time and wouldn’t have to be insured, if ever true to begin with, finally stopped.
The individual mandate, sickeningly called the “individual shared responsibility provision,” however, is firmly in place, though it has nothing to do with “shared responsibility” and much to do with increased profits for the insurance companies. The penalties that “irresponsible” individuals would have to pay for remaining uninsured increase from $95 the first year to $325 in 2015, to $695 in 2016 and beyond. Even at the 2016 rate, you’d pay less for the penalty than you would for two monthly premiums if you make 400% of Federal Poverty Line (FPL), which would be $44,680 for one. So there might be many “cherries” out there who prefer to pick the penalty than to have their pockets picked.
Forced out of the cherry picking business, insurers are now moving to “lemons,” especially HIV-positive ones. This time, though, dropping them is the preferred action. According to the National Journal, the ACA “prohibits insurers from denying coverage to individuals with preexisting conditions, but some companies may be limiting their prescription drug offerings to steer HIV patients to other plans.”
"We're seeing policies in place by insurance companies that certainly look like they are intended to make plans look less attractive to patients with HIV," said John Peller, vice president of policy at AIDS Foundation of Chicago, in the article.
There are two main concerns about this HIV “lemon-dropping”—“that companies aren’t offering single-tablet regimens (STRs) for HIV patients in their Quality Health Plan (QHP, the benchmark for ACA exchange plans) formularies,...and that there is a lack of transparency as far as what the plans offer to individuals with the disease.”
Though STRs are indeed expensive, there’s data that show that they reduce hospitalizations by 23% and medical costs by 17%, not to mention the much greater rate of adherence if people only have to take one pill once a day. Greater adherence equals suppressed viral load, equals less risk of transmission and fewer new infections. Much like syringe exchange programs, STRs provide a big bang for the buck, in treatment and also as a tool of prevention.
It’s no secret that I’ve suspected since 2010 that insurance companies would find a way around the axing of the pre-existing conditions clause. I've predicted several times that instead of discriminating against the people with the disease, they would begin to discriminate against the disease itself. I believe this is the first wave of that discrimination.
As someone who works with and cares about HIV-positive people, I’m horrified at the potential resurgence of the epidemic that this could cause. As someone living with a condition that requires me to take six medications two or three times a day, I wonder how long it will be before the drugs that alleviate the nausea associated with chemo and radiation are dropped from formularies or the drugs that control blood sugar without insulin injections or the blood pressure drugs that keep my throat from exploding.
Because whether we have HIV, cancer, diabetes, or primary biliary cirrhosis, to the insurance companies, we’re just lemons. I say it’s up to us to make the lemon-aid that will get rid of insurance companies and ensure that everyone gets the medications they need to stay alive. They want “individual shared responsibility?” We can do that too.
By all of us paying into a healthcare trust fund; by being responsible for ourselves and each other; by removing all financial barriers, including the absurdity of healthcare as something to be bought and sold on Wall Street; by ending racial and socioeconomic disparities; by making insurance companies a thing of the past; by freeing employers from the expense of insuring their workers; by never having to pay a premium, deductible, co-pay or co-insurance again—all of that is within our grasp with true universal healthcare. What more has to happen before we close our fists around it and don’t let go?
By Sue Saltmarsh
I listened to an anti-gay, narrow-minded Illinois representative blowing hot air about how a baker in Colorado is being sued because he wouldn’t make a wedding cake for a gay wedding, claiming it violated his religious convictions. I listened to another lecture his colleagues about respecting "the scripture." A third warned, with timorous voice, about the bill "destroying the very foundation of our society."
The bill being “debated” then later became Illinois’ path to being a modern, civilized state where all its citizens have the human rights afforded straight, white, male citizens all over the country. I won’t go into the lack of rights experienced by black, brown, red, disabled, poor, old, and female citizens – they are for other blogs. Those of unconventional sexual orientation are the focus of this one.
Are we forever doomed to battle after battle being waged against acceptance, compassion, and equality by the so-called religious, who refuse to even consider that the very deities they say they believe in would disapprove of their highjacking and perversion of the “commandments” they’re supposed to live by in order to use them as weapons with which to beat down those who are different than they are? Their God, their Jesus, their Yahweh, their Allah all teach love and acceptance of their fellow man. Not one teaches that homosexuals or bisexuals or transgender people should be treated as if they were not human beings. And really, have we not been there, done that with slavery? Did we learn nothing?
In addition to the strident, hateful rhetoric of the Tony Perkinses and Fred Phelpses of the nation, squealing about gay marriage “ruining” the “institution of traditional marriage,” (though not one can explain exactly HOW that ruination would manifest), there are also the so-called “patriots” who claim that the very concept of religious freedom that formed the foundation of this country will crumble should gay and lesbian couples be given the right to marry.
But what about those couples’ religious freedom? What about mine? As a proud Pagan, I believe that we evolved in order to be stewards of the beautiful world we were planted on and to reach for our absolutely highest human potential. As part of that responsibility, I try to live the one commandment that many Earth-based and indigenous belief systems adhere to—HARM NONE. Other belief systems, especially those that insist that they are the only “right” ones, harm, and have harmed, many for centuries. Laws promoting discrimination and perpetuating hatred, bigotry, and stigma harm us all by making our society smaller, meaner, and more limited than it could be. No great civilization can grow out of closed minds, hardened hearts, and the inability to see value in everyone’s contribution.
If you claim to be a “good Christian” on your way to heaven or a “true patriot” who values the constitutional mandate of every American having the right to life, liberty, and the pursuit of happiness, how can you deny a couple of any kind not just the right to a public ceremony that confirms their love and commitment to each other, but also the rights and benefits of being married in the eyes of government and society.
As a “minister” of the Universal Light Church, I have performed five marriages – four gay, one straight. Two of those marriages have been dissolved, but the three others remain strong, even in the face of infidelity, illness, and financial hardship. Those three couples are gay.
It has occurred to me that perhaps what the ideologues fear most is that, given the chance, gay and lesbian couples would prove to be more faithful, more committed, better parents, and better able to keep the vows they make on their wedding day than the now 50 percent of married straight couples who end up getting divorced. So once again, it becomes not about what is best for the most people, but about the bullies getting their way.
As the law was passed in the Illinois House, I was driving home and missed that luminous moment of victory when, I imagined, the chamber would light up and reverberate with uninhibited cries of victory, people jumping up and down, and fists pumping the air. When I later saw it on the news, I watched as the speaker proclaimed the law passed and Representative Greg Harris, steadfast warrior for his community who had struggled for years to see this day come to pass, walked to the end of his row with his usual grace and dignity to hug a colleague quietly and receive a few pats on the back. No whoops, no hollers, no gloating, not even a twitch of smugness—pure class.
Harm none, indeed.
By Sue Saltmarsh
I could never live in a place where there was only one season – no hot, glaring, snowless place for me! But I do like constancy, something that is becoming more and more rare in the weather and in the way we deal with changes.
In the last four years, we’ve seen our government go from a democracy to a plutocracy; our politics go from moderate to intransigently “conservative,” though I still haven’t found out just what exactly they are “conserving.” Our people have slid from the middle class into poverty; our schools from bad to worse; our national morality (and no, I’m not talking about theology which is way too often the root of the worst evil) quickly disappearing.
Contrary to the evidence, however, change is not always bad. Marriage equality is seeing the light at the end of the tunnel. The new pope actually seems to be sane. The GOP’s approval rating is the lowest it’s been in history and we have hope for electing our first female president.
TPAN has also gone through some changes lately. After 10 years, the agency has moved from the warm, welcoming brick and photo-covered walls of 5537 N Broadway to the cold beige, corporate, artless (no nails in the walls!) former call center of Aon at 5050 N Broadway. Oh, what a difference five blocks can make!
Privacy is a thing of the past. The five-foot partitions that replace actual walls are not conducive to having phone conversations, but since the building blocks cell signals, the only way to do that is on the TPAN phone and I try not to use that for personal calls. Unlike my mother, I am not a gleeful eavesdropper and I hate having to listen to other people’s calls against my will.
But there are some good things about the new place. Most of all, more space for clients; free staff parking across the street in a garage; bigger desks; and only one key to worry about. And the women’s bathroom rocks (though the men’s doesn’t). Publications also has its own four-person room with an office for Jeff that’s bigger than his old one.
And then there’s Jeff. After the, to me, unexpected and sad resignation of former Executive Director Bill Farrand (I refuse to call the leader of a non-profit service organization a “CEO”—such corporatization is counter-productive and, well, stupid), Jeff’s 17 years at TPAN were acknowledged and rewarded by the Board making him Interim ED.
I worry about how he’ll handle the dual roles of Editor and ED, either one by itself being time and energy consuming. But I also know he loves TPAN enough to do it well and I intend to do whatever I can to help him. I worry about the demands it will put on his relationship and his health. But I also know that his partner Stephen will make a great “First Lady,” being his dashing self at fundraisers and parties, understanding and supporting Jeff in his new role. And Jeff will take care of his health, wanting to continue to set a good example for our staff and clients.
I’m glad that there will be someone in the ED’s role who understands what it takes to produce Positively Aware, as well as knowing firsthand its value to TPAN, as most of our EDs have, at least in the abstract. TPAN has become so big—going from 15 employees when I started in 2004 to almost 50 now—that I realized today I don’t know who eight of my co-workers even are, let alone what they do, and I doubt the majority of the staff know what we do or even read the magazine.
It’s officially Fall here, though the weather has yet to provide a string of days that contain that particular Fall-like clean chill or the gusts of wind that blow the leaves off the trees and swirl them around on the sidewalk. For TPAN, it may be the beginning of Winter – a time to pull in, to think, to plan, to rest, to resolve before the true birth of TPAN’s Spring shows us that change is good, new beginnings exciting and full of promise, if only we can embrace them.
After all, wasn’t 10 years long enough? Wasn’t it time for the season to turn? Perhaps I should just think of it as the avoidance of living in California or Florida, somewhere with no noticeable seasons, and now I’ll be able to smell the leaves and dig out my gloves, and eat oatmeal for breakfast. There will always be things I miss about the old place, but time is too short to be stuck in the past. Fall is good. Change is good. TPAN’s doing fine.
by Sue Saltmarsh
I came fairly late to the single-payer dance. I didn’t even know there was a “movement” until I was recruited by the Illinois Single-Payer Coalition after joining Healthcare-NOW!, one of the two major national advocacy organizations, along with PNHP (Physicians for a National Health Program).
Turns out I just wasn’t made for the whole consensus-based, everything-by-committee approach. The only experience I’ve had with creating a major event has been the years I spent in show business, where mounting a successful production takes a team, yes, but a team with an identifiable leader and with each person knowing what their task is. In the midst of my frustration with what I perceived as a movement that was going nowhere, I heard the echo of the words of one of the most gifted costume designers I ever worked with—“if everyone else is just fucking around, get off your ass and do it yourself!”
So I started to do that in 2011 after I read a blog by David Barr in which he talked about how it just wasn’t right for a woman to get her HIV meds through ADAP when her mother couldn’t get her blood pressure medicine at all. He was calling for AIDS activists to gather at the Lincoln Memorial when the International AIDS Conference was in D.C. to demonstrate for true universal healthcare…for everyone. I was struck by the idea of a 1963-type gathering of hundreds of thousands of people demanding an end to the corrupt, profit-driven system we have now. Does America need a new healthcare system? DUH! DUH – the Demonstration for Universal Healthcare was born.
In November of 2011, I attended the United States Conference on AIDS, held in Chicago, and went to every session I could on healthcare policy, hoping that someone, anyone, would talk about ideas that the HIV community could use to prepare for what I believe will be the ultimate and abject failure of the Patient Protection & Affordable Care Act—known as the ACA or “Obamacare”—especially for people living with HIV and other chronic illnesses. I even irritated some people by asking in every session, “What is our Plan B in case it’s not what it’s supposed to be?”
By January of 2012, I had begun applying for a permit to demonstrate on the National Mall. A team of sorts was assembled, some of whom dropped out, some who hung in there, some who contributed tangibly, all of whom I was and am grateful for. The permit was acquired, along with the daunting realization that $100,000 would have to be raised to pay for this shindig. At the height of its wealth, DUH had $367.54 in the bank. So the permit was relinquished and I slunk away, down but not out, at least not yet.
In the meantime, the HIV community seemed to be caught up in the glittery promises of the ACA, buying the spin even as every day brought news of something else going wrong, being postponed, or becoming the target of repeal attacks by Republicans. Still no mention of a Plan B, at least from leading advocacy organizations, though individual activists were beginning to ask questions, to replace complacency with skepticism. The propaganda machine may be strong, but not everyone is under its influence anymore.
And then there was news footage of Detroit’s “rolling protests” – lines of cars crawling down the highway to protest the governor’s fascist policies and imposition of an “emergency financial manager” in several towns, including Detroit. The Demonstration became the Drive for Universal Healthcare!
Following Canada’s example (their national system began in the provinces), I envisioned a convoy of cars, trucks, vans, motorcycles, and RVs driving through all the states that have active universal healthcare bills in their state legislatures. We knew we couldn’t do the whole country in one trip, so we decided the East to Midwest region should be the first trip. Maine, Vermont (which has already passed a single-payer law), New York, Massachusetts (seems not everyone is pleased with “Romneycare”), Pennsylvania, Ohio, and Illinois were the states, with Maryland added late in the game.
This approach will minimize expenses (no porta-potties, security fencing, or stage/lights/sound to pay for) with each vehicle being responsible for its own expenses, and it would enable people who were limited in time, energy, or money to decide for themselves where they wanted to join up and where they would exit - drive for an hour, a day, or the whole trip! Lines of vehicles, all identified with purple and yellow ribbons streaming in the wind, will drive (at the speed limit) through these states, stopping along the way for rallies, screenings of The Healthcare Movie and town hall-type discussions, hearing from local politicians and activists, sharing stories, songs, ideas—becoming unified not by any organization’s agenda, but by one common cause: the establishment of a truly universal, publicly financed, comprehensive healthcare system. Everybody in, nobody out.
I want the HIV community to be there, to show off their kick-ass ACT UP activism. I want to see the end of complacency about the ACA and the beginning of loud, proud, relentless demand for universal healthcare. And yes, I guess I think it’s time for the end of AIDS exceptionalism and the beginning of human exceptionalism. I live with a potentially fatal chronic condition, too, as do millions. It doesn’t matter what our diseases and conditions are – we all live in bodies, we all get old, we all eventually need healthcare sometime between birth and death. Healthcare is a basic human need and we have the power to give it to each other.
THAT’S my Plan B.
Visit www.duh4all.org, or follow DUH on Facebook and Twitter.
National Strategy Progress?
Beyond implementation of the National HIV/AIDS Strategy
By Sue Saltmarsh
On March 29, Dr. Grant Colfax, Director of the Office of National AIDS Policy (ONAP), published a blog touting the success so far of the implementation of the National HIV/AIDS Strategy that President Obama issued in July 2010. I remain puzzled.
Dr. Colfax lists the following as topics of community discussions between “federal, state, and local governments and key non-governmental stakeholders” that have taken place in Miami, Los Angeles, and Chapel Hill, North Carolina:
• State and local efforts to concentrate resources in communities where HIV is most common and to scale-up evidence-based interventions
• Interventions to improve outcomes along the “cascade of care” (i.e. moving people from an HIV diagnosis to care, treatment, and viral suppression)
• The importance of the Affordable Care Act implementation for HIV care and prevention
According to Dr. Colfax, “ONAP and other Federal partners provide information about the current state of the epidemic nationally and ongoing Federal efforts to implement the Strategy. Key stakeholders provide their perspectives on implementation efforts at the State, local, and community levels. ONAP staff also visit local clinics, community-based organizations, and academic centers to hear what these organizations are doing to prevent and treat HIV. The goal is to share information, identify strategic priorities, and determine next steps for moving forward.”
Like anything that involves large numbers of people who carry with them organizational and/or personal bias, experience, and varying degrees of investment in time, energy, action, and ideas, the NHAS has moved slowly and with few “Eureka!” moments. Though Dr. Colfax maintains, “It is inspiring to see the depth of commitment to the goals of the Strategy and the ways in which people are bringing their passion and creativity—backed by evidence and data—to bear on their local epidemics,” he starts his next paragraph with “A focus of these meetings has been on improving outcomes along the HIV care cascade,” complete with a link (see below) to a blog about the CDC’s release of a report at the International AIDS Conference in July 2012 regarding the proportion of people engaged in the stages of HIV care based on a variety of demographic factors (read that blog here).
The CDC recommendation to test everyone and link them to care if they’re positive is unarguably right in terms of public health policy, as well as being the morally right thing to do. But I’d have liked to be a fly on the wall during those community discussions to see if anyone had the balls to challenge the assumption Dr. Colfax makes about the impact of the Affordable Care Act (ACA) on the cascade of care. I suspect not. According to his blog, the most-asked question from state and local officials was “What do we need to do, as a system, to reach out in culturally competent and accessible ways to bring people into care and treatment?”
I suggest that the focus on “culturally competent” messaging, educational efforts that make complex medical information understandable, and a variety of anti-stigma “campaigns” is woefully inadequate. While all of those things have an important role to play, none can make a dent in the epidemic without a healthcare system that guarantees care and treatment, not just insurance of varying quality, to everyone.
The ACA’s Medicaid expansion is a fine idea, except for two things—Congress seems determined not to fund it, and there are still going to be millions whose incomes are too low to pay for their healthcare while being “too much” to qualify for Medicaid or other assistance. And there’s the question of what’s going to happen in states that have refused to participate and/or that have slashed their Medicaid budgets to the bone. There are also now going to be millions who are forced to buy insurance from exchanges (if the exchanges are implemented) with exorbitant deductibles, high co-pays, and/or less coverage than they need because that is the only kind they can afford.
“Currently, as a result of the healthcare law, there are 71 million Americans receiving expanded preventive services coverage without cost-sharing” is true, but how many of those screenings, for HIV and other diseases, will lead to many of those people not only having to deal with the reality of their new diagnoses, but also the added stress, fear, and desperation of how they’re going to pay for the care and treatment they need, even if they have insurance, and forget it if they don’t.
Dr. Colfax optimistically says, “…we are at a ‘tipping point,’ where our collective efforts will turn the epidemic around.” I would so like to agree with him, but what I hear and see in the stories of my HIV-positive friends, in the news, on the Internet, and through my work as a single-payer activist leads me to think that before that “tipping point” can come, another must pave the way—the one that leads us all to demand that the U.S. join the majority of other developed nations in the world and establish a true universal healthcare system.
Without that, but with all the things that are supposed to be addressed in culturally sensitive messaging, educational efforts in plain English, and creative anti-stigma campaigns, how can any doctor, social worker, or public health official look someone in the eye and tell them they must be tested? As it stands now, when a test comes back positive and that newly-diagnosed person asks tearfully what happens now, how will they tell their family/partner/friends, and how much is treatment going to cost, the “cascade” becomes a domino effect of mixed messages, unmet needs, and relentless perpetuation of the epidemic.
I don’t envy Dr. Colfax his job. Especially with all the budget cuts, sequestration, and the upcoming battle over the debt ceiling, the programs and services that have kept 70 percent of the HIV-positive people in the U.S. alive since the Ryan White CARE Act was established are in danger of decimation. But I also have to wonder why he, why anyone isn’t asking how the National Strategy is going to work without ADAP, without Ryan White programs? Is anyone asking how “test and treat” is going to work with no access to the “treat” part? Is anyone getting angry at all the “AIDS-free generation” sound bites that are nothing but words, with little practical application behind them?
In order for any kind of strategy to work, you must have the resources to enact it. In order for any plague to be cured, you must have the resources, human, scientific, technological, and financial to research, discover, make, and distribute the cure. Whether or not this financial crisis is real, whether or not worst-case scenarios actually happen, it’s clear that those in power are not of a mind to make sure those resources are available. So while I accept Dr. Colfax’s optimism as coming from someone who knows the “inside scoop” way better than I do, it seems like time for a reality check.
I get it—the National HIV/AIDS Strategy and the Affordable Care Act lit some flames of hope for those living with or at risk for HIV and we’re all supposed to remain steadfast, complacent, in our hope to see real progress and real benefits from them. But I ask, as I’ve asked before, what is the Plan B just in case these seemingly beneficial plans turn out to be nothing more than beautiful ice sculptures in a globally warmed room?
By Sue Saltmarsh
We hear a lot today about “taking responsibility” for our own lives, for the choices we make, etc. I was brought up to believe that taking responsibility, admitting when you’re wrong, not trying to wriggle out of things is the only way to be honorable with myself. So when I make a mistake, when I do, speak, or write something bad, wrong-headed, or unfair, I own up to it. It’s not easy sometimes—nothing can be worse than that squirmy moment of admitting you screwed up—but at least I know I took responsibility and I usually walk away feeling free of the burdens of shame, guilt, lying, or denial.
But I recently learned (I hope) a lesson that had to do with the flipside of owning a mistake. This time it was about standing up for what is mine, not letting anyone else take credit for work I did while they did nothing, not letting my own work be ignored. I explained to a friend at the time that I know what I did and that it made the end result better, that I didn’t do it for any credit and it wasn’t worth fighting about. And then I spent the rest of the day pissed off that I’d let my work be claimed by someone who didn’t do it.
People who are ignorant and prejudiced about those living with HIV judge them as selfish, perverted, sinners who won’t take responsibility for their own or their sex partners’ wellbeing, who “expect” to be “given” medical care and treatment. Some even think HIV is what they deserve, a sign of their worthlessness as human beings, the result of their own faulty choices.
But then there are the advocates in the HIV community who work so hard to educate, demonstrate, promote testing and treatment, fight stigma and hatred, who have the courage to own their HIV, their choices, and their own lives. I’ve worked with those kinds of people for almost 20 years now and you’d think I would’ve learned from them the importance of not just knowing I’m doing good things, but also celebrating them by saying, “I did that!” Not necessarily out loud, not for any outward glory, but as a sort of inner positive reinforcement to keep myself continuing to do good.
Most of us have things in our lives that we’re proud of, whether or not we ever get any credit for them from others. And most of us have those things we wish we’d never done or said, whatever the consequences of our words or actions might have been. And then there are the things we have no control over, or think we have no control over. But is that true?
I gave away ownership of something I did well and that was something I did have control over, a choice I made. Just as you can choose to make it to your doctor appointment on time, tell your family or friends you’re positive, take your meds, kick your addiction, eat better, rest well, play safe. And here’s the thing—when we choose to do it the right way, we also have the right to take responsibility for that. So good or bad, right or wrong, proud or sorry, own what’s yours.
By Sue Saltmarsh
I internally cheered when recently reading about the protest in House Speaker John Boehner’s office wherein protesters from ACT UP (NY and Philadelphia) and QUEEROCRACY stripped down to their slogan-painted skin and chanted, “Boehner, Boehner don’t be a dick – budget cuts will make us sick!”
Having already established a rather steel-belted reverence for ACT UP and the many ways in which they fought and won battles with pharmaceutical companies and the FDA in the early days of the epidemic, it was good to see the “next generation” displaying (some literally) the balls and fervor of their predecessors.
There have been many times when I’ve despaired over the politeness and politically correct ineffectiveness of the single-payer movement, wishing they would learn some ACT UP lessons. After all, the causes of both groups overlap quite tangibly.
ACT UP was formed in 1987 by a group of activists who were outraged by the response (or lack thereof) to the AIDS crisis. Their first demonstration was a precursor to Occupy Wall Street, as they gathered there to protest the profiteering of pharmaceutical companies. Seventeen people were arrested and shortly afterwards, the FDA accelerated their approval process.
I’ve been lucky to have met many HIV/AIDS activists in my almost 20 years working in the non-profit field of AIDS services. Some, like ex-colleague and friend Matt Sharp have ties to ACT UP themselves, as well as long histories of demonstrating, testifying in front of FDA panels, presenting at conferences, and in Matt’s case, diving once more with unabashed courage into the Unknown of clinical trials and experimental treatments. Some, like Positively Aware editor Jeff Berry, write, speak on the radio, lead advocacy groups, and quietly remind us never to forget the ones we’ve lost. And then there are the “media darlings”—Jack Mackenroth, Mondo Guerra, Jamar Rogers, all launched by “reality” TV into success in their fields, but also choosing to use that platform to inform and inspire others to protect themselves and if HIV-positive, to live their best, most empowered lives.
And now we have these warriors in the nude from ACT UP and QUEEROCRACY daring to not just speak Truth to Power, but to do so without the armor of clothing, thus, perhaps unintentionally (or maybe not) proving that bodies that contain HIV are really no different from bodies that don’t; that they are beautiful and strong, tall and short, skinny and round, and every color of the rainbow.
So here’s to you Larry Kramer, Peter Staley, Garance Franke-Ruta, Ann Northrop, and Charles King and to those who’ve followed in your footsteps. People who call themselves activists, whatever their cause may be, should study at your feet, learn from your experiences, and be fueled to truly ACT UP instead of just talking about thinking about talking about doing something.
ACT UP was created because people were dying. People who were too often shunned, persecuted, and downright condemned by the “normal” society around them. 48,000 people die annually because they can neither afford health insurance nor health care. People who are often shunned, persecuted, or downright condemned by the Wrong Right (and their political candidates)—the poor, the different, the “others,” along with those of us who may make “too much” to qualify for help but not enough to pay for the care and treatment we need.
Will it take our nakedness; our revealing of our “defects,” the ravages of cancer, arthritis, diabetes, or skin diseases; our dragging of oxygen tanks, walkers, and wheelchairs up the Capitol steps? That might be just too much truth for Power (or anyone else) to bear!
In any case, real activism is alive – may we all see our place in it, clothed or naked, loud or quiet, at our keyboards or in the streets. Before tens of thousands more die, may we all see the wisdom in Larry Kramer’s words, “...until we organize ourselves block by neighborhood by city by state into a united visible community that fights back, we're doomed.”
By Sue Saltmarsh
Four years ago today, I returned to TPAN after five weeks of recovering from a total bodily collapse and what turned out to be my entry onto the slippery slope of the allopathic bear trap that is the American healthcare system. But this isn’t about the system, at least not as anything more than a bit player in the drama. Perhaps caution is appropriate here – chances are that if you get to the end, you will know way more than you want to about my personal medical circumstances, so consider this a TMI warning!
I was 52 at the time, had never been to a doctor for anything other than the required school physical and my yearly gynecological visit. I come from a long line of strong, long-living, “apple” women and I scoffed at the idea that stress could have any significant effect on my health. I had weighed as much as 320 pounds, traveled the world with Hubbard Street Dance company, had the upper body strength to arm wrestle stagehands—and win—and had been exposed repeatedly to dangerous chemicals, second hand smoke, alcohol, and venereal diseases, all with no ill effects or infections of my own. But for (ironically) nine months before the collapse, I had been under such constant high stress that I could feel my blood pressure rising, couldn’t shut off my list-making brain long enough to sleep for more than three hours, was dealing daily with a world of building permits, contractors, and interior designers that was completely foreign to me on top of the duties of office manager, database manager, and assistant to an executive director who was MIA most of the time.
On the day that my friends took me to the ER, I was experiencing uterine hemorrhaging, crushing fatigue, and as it turns out, sky-high blood sugar. I came out of anesthesia after the D & C they performed to be told A) I should have a hysterectomy, B) I was diabetic C) I was dangerously anemic D) my blood pressure was out of control and E) I MUST find a primary care doctor. Four uninsured days and $30,000 later (and I’m not even going to rant), I was released to the care of my sister in Springfield and the trap began to tighten.
I found my primary care doc, who I loved and lost two years later to retirement (but in losing him as a doctor, I’ve gained him as a treasured friend). He subsequently diagnosed me with primary biliary cirrhosis, a mysterious auto-immune liver disease that they think is genetic, but don’t really know and which has nothing to do with drinking a lot, which I never did. In the next two years, I was also diagnosed with vitiligo, atopic dermatitis, rheumatoid arthritis, macular edema, carpel tunnel syndrome, esophageal varices, enlarged spleen and liver, had my right hip replaced, and have continued to struggle with the blood pressure. This is a big issue with the liver disease, which causes the liver to harden so that blood backs up into the spleen (thus the enlargement), which causes varicose veins in the esophagus, which can rupture, causing death within three minutes, a circumstance I found myself in in June when I went to Kansas City to see my niece’s ballet recital and ended up in the ICU of Liberty Hospital (highly recommended if you ever collapse in the KC area).
I am not HIV-positive. But the journey I’ve traveled through my own medical terrain has given me an appreciation of how my friends and colleagues live with their HIV. Knowing how draining my fatigue is by the end of the day, I can imagine how they feel after testing and handing out condoms at a bath house until 1:00 a.m. after having worked at TPAN that day. Knowing how impossible it is to find a doctor, let alone one of the six specialists I’m supposed to see regularly, who has late evening or weekend hours, I know how hard it is for them to make their appointments without interfering with their work day. Having experienced having my credit card declined at the pharmacy when I went to get my refills, I can easily imagine what it’s like for them not to be able to afford their meds.
When I first started at TPAN, there were 15 employees, the majority of whom were HIV-positive. There are now 40-some, most of whom are HIV-negative. Some are like me, dealing with serious chronic diseases of their own, but many are young and healthy and, like me before 2008, can’t imagine being anything but.
I worry that some of the understanding, empathy, and concern for each other is gone, that TPAN is becoming less of a family and more of a corporation. I find myself (sometimes unreasonably) resisting the robot-esque corporate-speak of the insidious offerings of “tips on healthy living”—for people who are NOT living with chronic diseases—that our “HR department” (one very earnest guy who will probably someday shoot to the top of some Fortune 500 company) adds to his email signature; I foment radical petitions (but never circulate them) protesting everything that attempts to put us in neat little boxes; I bite my tongue and leave the room when the 401K guy is extolling the virtues of investing in mutual funds that contain health insurance, oil and gas, and Wal-mart stock, righteous in my old-age penury in the name of social consciousness.
Sometimes, “progress” isn’t. Sometimes, you have to find your tribe and hang on tight so you’re still connected even after the bulldozers have ploughed over you. Sometimes, knowing you’re just as tired, pain-full, queasy, gimpy, headachy, diarrhetic, and feverish as the guy in the next cube somehow makes it more tolerable, especially if you can bitch about it and know that he’s been there too.
So show me your neuropathy, your insomnia, your sweaty forehead and your sprint to the bathroom and I’ll show you my red rash, my nine-months-pregnant-sized belly, my swollen joints, and my pounding blood pressure. We’re all in it together—let’s help each other.
By Sue Saltmarsh
Every four years we are treated (or subjected) to the audio and visual demonstrations of the differences between the Republican and Democratic political parties in the form of their national conventions. This year, the Republicans met in Tampa, Florida, amid threats from hurricane Isaac which luckily decided to avoid politics. The Democrats met in Charlotte, North Carolina, not exactly a friendly environment for racially diverse, anti-gun, pro-choice, gay-loving liberals, though in the comparison of the two Carolinas’ female governors, Democrat Bev Perdue leans left while Tea Partier Nikki Haley is, well, a Tea Partier.
In the interest of full disclosure, I forced myself to watch the debacle in Tampa while I happily looked forward to turning on the MSNBC coverage of the Charlotte success. I will not pretend to be free of bias, but seriously, how could anyone watch both events without some measure of incredulity at the Republicans’ and admiration of at least the Democrats’ skill at hiring talented speechwriters?
Visually, the contrast was also stark, an avant garde movie art director’s dream perhaps. As the camera panned the crowd in Tampa, there was not one colorful face to be seen in that sea of glaring white. The lacquered hair, the J. Crew clothes, obligatory ties for the men and pearls or crucifixes for the ladies, peppered with a few veterans wearing the hats of their units and some tasteful political buttons pinned to equally tasteful cardigans could not have been purposely designed more appropriately for the gathering.
Conversely, black, brown, yellow, and red faces mingled with white ones in Charlotte; costume included everything from t-shirts to tube tops, suit coats to ponchos, the customary “Mad Hatter” Uncle Sam hats bobbed alongside cowboy hats and veterans once again wore their caps, this time the women’s version as well as the men’s. Though some of the hair probably started out lacquered, mostly it was a bit mussed, eyeliner and mascara ran freely from both sweat and tears, and if there had been a floor-level camera, I’m sure it would have picked up plenty of Birkenstocks and Naturalizers among the Prada and Manolo Blahniks.
As speakers at each gathering held forth on the grand plans of the men they were proposing as leaders, there were also stark differences. I am not alone in noting the falsehoods that tripped off Republican tongues – even their own Wrong Right media criticized the oh-so-easily fact-checked lies that were repeatedly uttered and one regrettable campaign staffer actually had the misfortune to say their campaign wouldn’t be “dictated by fact-checkers.”
On the Democratic side, there is one lie, an exaggeration, really. But it is the one closest to my heart and I will not let it go unnoticed. Every time one of the speakers claimed that the ACA has provided healthcare to everyone, I screamed at my TV, “NO, it hasn’t!! Thirty million people left out in the cold is not ‘healthcare for everyone!’ Insurance companies still controlling who gets what based on their ability to pay is not ‘healthcare for everyone!’ The ACA IS NOT UNIVERSAL HEALTHCARE!” But no Democrat is claiming to have superhuman athletic ability. No Democrat is saying that Republicans are responsible for plants closing while Clinton was president. No Democrat is accusing Mitt Romney of being an anti-American cult follower.
And then there were the women. Ann Romney perkily spoke about her love for her husband and children, how Mitt made her laugh (?), the hardship of their early years eating tuna and pasta (imagine!), and how all the ladies knew it was they who worked the hardest, worried the most, shouldered the heaviest burden, not the men, oh no. But all those ladies could be sure of one thing – the Romneys loooove them! I shook my head in disbelief at the squeals of delight coming from the females in the audience who were obviously willing to believe the transparently desperate attempt to win back some of the women’s vote that has been eroded by the misogynistic policies and pronouncements of her husband and other Republican men who don’t even seem to know how the female body reproduces.
Michelle Obama, on the other hand, spoke about her and her husband’s upbringings under very different circumstances than the Romneys’. While Mitt’s father saw the fulfillment of the American dream, Michelle’s father saw only mornings of struggle to go to work with his MS and Barack’s father wasn’t even there. While Mitt and Ann were eating their tuna alfredo, Michelle and Barack were paying off more in student loans than they paid in rent and considering themselves lucky to have tuna at all. While Ann went through her own struggles with MS and breast cancer, Barack’s mother died of ovarian cancer after fighting her insurance company to get treatment. But Michelle didn’t pit women against men, rich against poor, black against white – her stories were about triumph over challenge and her honesty in acknowledging the fears she had about how his being president might change her husband and her daughters captivated her audience so that when she said, “Being president doesn’t change who you are; it reveals who you are,” I doubt there was one person watching who didn’t think of what it would reveal about Mitt Romney and who wasn’t grateful for what it has revealed about Barack Obama.
After Bill Clinton’s speech reminded us of why we loved him (even when he couldn’t keep it in his pants), and how possible détente is when both sides work at it (“Heck, he even appointed Hilary!”), I couldn’t wait to hear our President make his own case. I was not disappointed.
When I heard Obama speak at the 2004 convention and knew I was listening to the first black president of the United States, he was new and starry-eyed and full of hope and truly believed what he was saying about there not being red states and blue states, but rather one United States. Eight years later, I heard an older, wiser, more realistic, maybe a little harder, perhaps a bit braver—when he said with steel in his eyes, “I'm the president,” it gave me goosebumps—but still hopeful man, still confident that we can be that one country rather than the divided two that have emerged in the last four years.
I don’t know if that unity is possible – I fear not enough of us want it. I myself have sometimes wished all the haters, bible-thumpers, bigots, racists, gun-toters, and profiteers would just move in together and leave the civilized rest of us alone. But that’s the thing about a family – there are always going to be some members who don’t know how to behave in public, who need to bathe more often, who aren’t the brightest bulbs in the box, or who don’t seem to know basic biological facts, but when push comes to shove, they’re part of the family and you don’t leave them out in the cold, hungry, thirsty, or in need of help. You breathe through your mouth, explain things twice (or more), forgive them their faux pas, and sit down to eat together.
We could’ve learned that from the only true Americans if our ancestors had just stopped moving, infecting, and killing them in order to steal their land, food, and natural resources. Maybe it will take the first Native American president to finally teach us how to be a tribe. Or maybe a man who knows something about the tribes in Kenya. One thing is for sure – it won’t be a rich white guy with a car elevator in his house.
By Sue Saltmarsh
I admit it – it’s hard to be the “child left behind” as my PA colleagues are all in Washington attending AIDS 2012. But perhaps I have the advantage of distance from what must surely be a consuming, exhilarating feeling of unity, shared struggle, and hope for the future. If I were there, much like at my first HIV/AIDS conference last year (USCA), I’m sure I would be swept up in the incredible energy of thousands of people from all over the country (and this time, the world) coming together synergistically to exchange information, ideas, and experiences that share the common theme of dedication to ending this disease. Perhaps for me, distance breeds objectivity, while at the same time, a certain level of re-dedication to my little “niche” in the fight.
As my colleagues attend sessions focusing on global policies and challenges and hear speeches about PEPFAR and the National HIV/AIDS Strategy (NHAS), and disparities in care and treatment both within our own country and between resource-poor and wealthier nations, I will be back here like a dog with a well-chewed bone asking how we are ever to arrive at Secretary Clinton’s “AIDS-free generation” when we can’t even provide care and treatment for the people we know are positive now, let alone those who have yet to find out that they are?
While this conference is one of the best reminders that the U.S. is just another country, no better off than most and worse off than others in terms of the fight against HIV, I admit that my particular drum is a nationalistic one. Unlike the Gates and Clinton Foundations, whose great work I applaud, I care more about what’s going on in my own country than in Africa or Europe. And unlike PEPFAR and the NHAS, my noise is not just about HIV/AIDS—it’s about every chronic, life-changing, if not threatening, disease or condition. As stated by AIDS activist David Barr, “…it is not enough to demand HIV treatment for a woman with AIDS in Alabama while her mother is dying of hypertension and her children suffer from asthma.”
We will not ever have an AIDS-free generation unless we finally have a profit-free healthcare system. We will not ever have a healthier, more productive, more unified country until everyone at risk for HIV, cancer, heart disease, Alzheimer’s or any other disease has equal access to prevention, screening, and treatment without having to choose between food and healthcare, housing or healthcare, child care or healthcare or the threat of medical bankruptcy.
It was David and his fellow activist Gregg Gonsalvez who started my engine in 2010 – their idea was to organize a massive demonstration on the opening day of AIDS 2012 to demand universal healthcare. But the day was already reserved by another organization, there was no community-wide enthusiasm for the idea, and David and Gregg soon moved on to other more pressing work. But my engine kept running and the Demonstration for Universal Healthcare (DUH) was born and grew and now, finally, the AIDS community is beginning to wake up to the inadequacies of our current healthcare policy (as well as the improbability of Congress funding its implementation) and others have begun asking the question I asked repeatedly at the 2011 USCA—when the ACA fails, what is our “Plan B?”
So I hope that someone from the U.S. is talking to someone from Canada, France, Germany, Cuba, or any of the other nations among the majority in the developed world that have some form of single-payer healthcare to help them in their fight against HIV. I hope that, unlike other segments of American society, the HIV advocates at AIDS 2012 have both open minds and the willingness to learn from the experiences of others. I hope that as Secretaries Clinton and Sebelius, Congresswoman Lee, and Drs. Havlir and Fenton speak at the conference, they will also ask questions, listen, and take the lessons they learn with them so that the goals of the NHAS and the words “AIDS-free generation” aren’t just empty rhetoric, but rather actual possibilities.
It’s a good thing, our willingness to help other countries through such policies as PEPFAR and the Global Fund to Fight AIDS, but as world AIDS leaders come to our country and are able to see for themselves the disparities that keep the rates of HIV incidence and prevalence in Washington, D.C. and the U.S. South at rates nearing those in the Sudan, shouldn’t we make sure our own people have access to the care and treatment they and their loved ones with diabetes, liver disease, and arthritis need?
HIV/AIDS had to become a devastating cause of death for hundreds of thousands before PEPFAR and other worldwide efforts to help were created. According to a report published in the American Journal of Public Health in 2009 there are an estimated 45,000 premature deaths in the U.S. per year due to lack of insurance. How many more will it take?