Sat, 06 Apr 2013 13:36:34 -0500 marklarson@scorpioart.com (Positively Aware) IP.Blog 60 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?
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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.]]> Fri, 08 Feb 2013 16:53:00 -0600
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.”]]> Thu, 29 Nov 2012 14:16:00 -0600
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.]]> Wed, 17 Oct 2012 17:39:00 -0500
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.]]> Mon, 10 Sep 2012 16:02:00 -0500
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?
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I also know some of my state legislators and the battles they’ve fought to keep the kind of destructive budget cutting that destroys lives from being imposed on Illinois’ most vulnerable people – the elderly, the sick, and the increasing number of those living in or near poverty.

But when Rahm Emanuel became Chicago’s mayor, he began shutting down community mental health clinics – like there aren’t enough mentally disturbed people walking the streets already.

Now we hear about how Chicago’s taxpayers are going to be socked with a $50-million bill from the private company that controls the exorbitant parking meter racket in the city. I am once again thankful that I don’t own property I have to pay taxes on, but am pretty sure that a chunk of the “entertainment fees” (on the rare occasions that I can afford to go to the movies or out to eat) and sales tax I can’t avoid will go to pay that bill when $50 million might have helped to keep at least one of those clinics open.

And speaking of taxes, Sears followed up on the $150 million tax credit deal the governor cut with them in order to keep them in Illinois by firing 100 Illinois taxpayers while paying their CEO $9.9 million just in salary. Seriously??? It’s time that corporations in Illinois and the nation paid for the privilege of doing business here by paying their fair share of taxes instead of making us carry their load. Perhaps Governor Quinn should adopt the “never negotiate with terrorists” approach.

But the news that has me doing the E-Trade baby’s shocked face is that a bill cutting $1.6 billion from the state’s Medicaid programs was passed by the general assembly on May 24. Hundreds of thousands of people could be kicked to the curb. The Illinois Rx Program, which helps seniors and others, including HIV-positive people, afford prescription drugs is being eliminated. Families with disabled children will no longer be able to care for them in their homes, but will have to institutionalize them. And the HIV/AIDS community is looking at the very real possibility of this disease once again becoming a death sentence instead of the chronic manageable disease it is now.

The CDC estimates that 70% of the HIV-positive population in the U.S. depend on Medicaid for basic healthcare—quarterly doctor visits, lab work to monitor medication side effects, viral load and CD4+ cell count, along with any other conditions they may have—and the AIDS Drug Assistance Program (ADAP) for their antiretroviral drugs. According to recent data, only 20.4% get into care and treatment and stay there. With these cuts, many of them may not be able to get the medical care and medications they need to stay alive, let alone maintaining undetectable levels of the virus, which also cuts down their risk of transmitting it to someone else.

One of the many things that seems to be missing from our legislative process, both at the state and federal level, is foresight, or at least consideration of a shut-off point when the results of such measures are deemed a price too high to pay for the fleeting goal of debt and deficit reduction.

As I asked my state legislators, how many additional uninsured emergency room visits are going to have to occur, how many more people becoming unemployed and/or homeless, how many more elderly, disabled, and sick people will have to die before this policy is considered a failure? Have there even been such “triggers” discussed, let alone set? We frequently hear about the “sustainability” of Social Security and Medicare – what about the sustainability of a healthy, productive society? It would seem to me that removing access to even minimal healthcare will make that close to impossible.

I suspect Illinois is not the only state that has or will impose such sanctions on its neediest and most vulnerable citizens. There is, after all, a prevailing mentality among conservative lawmakers that these people are living the high life on the dole, defrauding safety net programs, not working as hard as they could, buying “luxury” items like refrigerators and toasters with taxpayer dollars, sick because of their own behavioral choices, never paying a cent of taxes. Yeah, sure.

Legislators should try living with diabetes (that they inherited from their gene pool or developed from their HIV meds) on even $20,000 a year, two times the poverty level. Actually, they should try living on $20,000 a year with NO chronic medical conditions and see if they can do it without ending up with high blood pressure from the stress, weight gain from the crappy food they can afford, and frequent colds and other infections from lack of heat in the winter and no relief from it in the summer. Then throw in some HIV, cancer, diabetes, asthma, liver disease, and back problems from the two jobs they work and see how that goes.

Those of us living with HIV or other chronic conditions need to pay attention. We need to note when measures like this go into effect and how healthcare data reflects the results. We need to keep track of what happens in our communities as more and more people are denied access to care and treatment. Write it down, report it to AIDS agencies, health departments, and news sources. Blog about it. And then start demanding single-payer healthcare. No more Medicaid, ADAP, co-pays, deductibles or ever-rising premiums. For a fraction of what we and our employers pay to insurance companies now, everyone would be covered 100%. This is a DUH moment, in more ways than one.

The HIV community needs to wake up, quit being complacent about an Affordable Care Act that will never be allowed, and even if it were, would only exacerbate the problem of for-profit insurance companies holding us hostage because we have nowhere else to turn.

Get out those old faded (or create new) ACT UP t-shirts and remember (or learn about) when AIDS patients were the bad-asses of activism who, even in skeletal, weakened, and feverish states, managed to get the pharmaceutical companies to change their deeply-embedded, torturously slow research and development processes and the FDA to adopt accelerated approval of drugs that were the only hope for the dying.

This time, if I have anything to say about it, it won’t just be the AIDS activists. As one single-payer advocate said, “You can’t opt out of healthcare. You got a body? You’re involved.” October 6, the National Mall – get more involved. Go to www.duh4all.org to register or find out more. Or come to TPAN on July 19, from 7:00 - 9:00 pm to see "The Healthcare Movie" and discuss what single-payer healthcare would mean for you. RSVP to Jessie Mott at 773-989-9400, ext. 232 or j.mott@tpan.com.]]> Tue, 29 May 2012 18:20:00 -0500
Brandon Macsata is one of a rare breed—a Republican with a heart and a more open mind than many Blue Dog Democrats. His work with the ADAP Advocacy Association is well known and respected and I do my best to report on that work in the weekly E-News—you will have, in fact, seen in the April 30 edition mention of the ADAP Solutions Summit and the report that was compiled from it.

When I downloaded the report and began to read it, I got as far as “While the likelihood of the Affordable Care Act being overturned by the Supreme Court was considered, for the purposes of this Final Report, it is assumed that the law will remain Constitutional and thus, in effect.” before a bellow of, “NOOOO!” issued forth from my solar plexus.

Supreme Court or no, this law which I call Republicare because Republicans and their insurance company cronies got way more of what they wanted than President Obama did, will never be allowed to go into effect, let alone being in effect now. It will be picked apart, defunded, challenged in more lawsuits, and ultimately forgotten before any of the provisions that would actually benefit anyone with a chronic disease, including HIV, has a wisp of a hope of kicking in. So, with trepidation and, I admit, an urge to just dismiss the whole thing as yet more yada yada yada, I read on.

The first “Short-Term Recommendation” was “Leverage Pre-Existing Condition Insurance Plans (PCIPs).” SERIOUSLY??? Perhaps there in D.C. PCIPs are actually within the grasp of people making under $50,000 per year, but in Illinois they sure aren’t. As a non-smoker of 56, I would have to come up with $489 per month for a $1,000 deductible policy. In New Hampshire, I would have to pony up $909 (for the “indemnity plan”) or $669 for “managed care.” I’m sorry, but if a person meets the FPL requirements to get on ADAP, where are they going to get that kind of money?

Second on the list was “Coordination with Pharmaceutical Patient Assistance Programs.” While I have nothing but praise for the pharmaceutical companies setting up these PAPs and co-pay assistance programs, I have to wonder how long it will be before so many people are relying on them that the companies put a cap on how many can receive this assistance. Granted, that’s just my tendency to jump to the worst-case scenario and, as far as I know, there are no rumblings about these programs cutting back, but it doesn’t seem too far out there, does it?

The rest of the short-term recommendations seem sound and reasonable, as do most of the long-term ones, especially those that have to do with simplifying forms, standardizing eligibility, and making reforms to the re-certification process.

Obviously, this panel managed to get an impressive amount of work done in a short period of time, something our Congress and state legislatures could learn from!

But was there even one small voice there at the table suggesting that perhaps the best way to solve the ADAP crisis is to make ADAP moot by solving the general healthcare crisis? In other words, was this a repeat of those first rounds of talks in 2009 when, despite some fierce advocacy efforts, single-payer—even the “public option”—was not allowed in the room?

The tenacity of some of the AIDS organizations to cling to the fantasy of the ACA like those on the Right cling to their guns and bibles astounds me. WAKE UP! Realize that it’s not only possible, but wise, to be for President Obama while at the same time against Republicare! I’m not saying he is totally blameless, but I am saying that the current growing wave of support for single-payer, along with the opportunities provided by the political awakening that’s going on and the Supreme Court case, are there for us to use to make him do what he wanted to do in the first place. This time, he will have no re-election to lose, so why not go for the gold?

There is also an opportunity here to end the age of AIDS exceptionalism on the best of terms. The HIV community needed it at the beginning because it had to build a fortress of strength, courage, relentless demand, and unity against a world of fear, panic, condemnation, and ignorance. Why haven’t other diseases learned the ACT UP lesson? Perhaps because their diseases do not carry the potential for moral judgment, religious condemnation, or societal shunning the way HIV did and regrettably still does.

But I think we would all be better off if the HIV-positive joined hands with cancer fighters, diabetics, the mentally ill, the disabled, and all other fellow humans who deal with chronic medical conditions of any kind. Yeah, that’s what DUH’s about, but it’s more than DUH (if you don’t know about DUH, click here).

I recently spoke at the Global Health & Humanitarian Summit at Emory University in Atlanta. There were almost 250 activists from 120 worldwide organizations representing causes from Deaf Empowerment to the Peace Corps to Water for Life to Mothering Across Continents to the NFL Players Association to Congolese Genocide Awareness to Laughter for Wellness to many advocates for universal healthcare. It was an honor to be included and embraced by so many people doing such good work. But most of all, it gave me hope for this messed-up world. From Friday night to Sunday night, people met, marched, watched, listened, spoke, networked, and hugged. Not one incidence of money being stolen off tables selling things. Not one second of discrimination or rejection. Though tears were often shed, they were the good kind. And as I sat at the DUH table on Saturday morning and watched an impressive parade of doctors and nurses dressed in absurd clown costumes, playing band instruments surprisingly well, march through the labyrinth of exhibit hall corridors, I thought, “Not all is lost. As long as there are people like this, there’s hope for us yet.”

So I say let’s start thinking not of solutions to one facet of a crisis, but to nailing the whole thing. America doesn’t need ADAP or Medicaid or CHIP or PAPs—America needs a new healthcare system.



]]> Wed, 02 May 2012 17:46:00 -0500 New York Times op-ed published on April 5, David de Ferranti, former vice president of the World Bank, and Julio Frenck, former minister of health in Mexico wrote “This week, at an international forum in Mexico City, country delegates from around the globe made clear that they are not only aiming for universal coverage but also rapidly getting there.”

They go on to say, “Except for the United States, the 25 wealthiest nations now have some form of it. Others are not far behind, including Brazil and Thailand. Even nations at lower income levels, such as the Philippines, Vietnam, Rwanda, and Ghana are working toward it. India, South Africa, China, and Colombia are on the move, too.”

Evidently, Mexico, with an economy one tenth the size of ours, drug-related violence common, and a skeptical populace, has managed to achieve what the U.S. can’t—true health care reform and universal care for its citizens.

Resistance from special interest groups was no less fierce than it has been and will be here and most Mexicans didn’t believe any solution would help. So what did they do? The reformers provided evidence, NOT spin, sometimes even pilot-testing their proposed changes. And they realized that expansion of coverage would have to be combined with a new way of paying providers that ended fee-for-service payment, as well as an emphasis on prevention to help avert costs of illnesses that can be prevented or managed well. If expansion occurred without the other two factors, the cost would be too high. Similar to the treatment of HIV, the combination of approaches is what works – you can’t manage the diseases if you only take the PI without the two NRTIs.

No matter what the Supreme Court decides in June, it is clear that the expansion of coverage the ACA has provided to children under age 26 who can remain on their parents’ policy, the coverage of children with pre-existing conditions (when their parents can find a company that sells kids’ insurance and then pay the exorbitant premiums), not to mention the fantasy of the 2014 Medicaid expansion, must be balanced with financial “NRTIs” – fees must be based on outcome, not number of tests, procedures, and treatments, and prevention must be a priority.

As these authors said, “Still another lesson is that one size definitely does not fit all. A country’s culture and politics matter. Take, for instance, the roles of government and the private sector. The fears some Americans have about big government are not borne out by results in other countries, where the private sector continues to have a vibrant role, especially in the provision of services, while the government concentrates more on financing, stewardship of the whole system and ensuring a level playing field.”

I have always maintained that Americans are capable of learning from what other countries are doing and making it “our own.” But in order to do that, we must have as many voices as possible demanding that level playing field as loudly as possible. We know what the Right will do—as soon as that ruling exits the Supreme Court’s doors, a firestorm of alarmist, “big government,” 99%-hating spin will be issued to ensure that seniors see single-payer as the arbiter of euthanasia, that “average” people see it as taking money from their pockets to pay for the health care of lazy, sinful, irresponsible poor people who refuse to get a job, that once again the self-righteous wailing about abortion funding will replay, and President Obama will be called a communist. And not one idea will come from them about how to fix the system if not through single-payer.

That’s why we have to be there to firmly grab the microphones and tape recorders and tell the truth. That’s why we can’t just sit and wait to see what happens, hoping against all evidence to the contrary that the ACA will survive and be implemented without further challenge. That’s why our army must be gathered, the original ACT UP activism resurrected and re-energized and taught to millions of people who aren’t HIV-positive, who know nothing about its success. That’s why we must all remember that 250,000 people hitchhiked, rode in cars and pick-up trucks, and took busses, trains, and planes to the National Mall in 1963 to demand basic human civil rights and won. They won. The Civil Rights Act was signed into law, just as the Medicare for All Act could be.

We can do it if we dare. We can do it if we overcome our doubts, our fears, our “what if”s. We can do it together. DUH.






]]> Fri, 06 Apr 2012 14:18:00 -0500
I assured him that I was and reached to take his offered hand up, but as it turns out, I was too in shock to get my legs under me and he had to haul me up by my armpits. As I tottered to lean against a building, he collected my purse and tote bag that had been flung when I fell and handed them gently to me as he asked if I could walk alright. Again, I assured him I could and didn’t have far to go.

“You really need to wipe your face – you’ve got a lot of blood and dirt. You should go somewhere to wipe your face,” he said, in a worried tone of voice as he looked to the end of the alley where a police car had just passed. I patted him on the arm and thanked him for stopping, told him to go, that I’d be OK, and staggered out of the alley, sorry that he might have had even a moment of fear that police would assume he was mugging me instead of saving me.

At that point, the initial shock began to wear off, along with any immediate numbness that had set in and my face began to throb. Worse was the arm I had also landed on. When I tried to lift my sleeve to wipe away some of the blood that was gushing from the bridge of my miraculously unbroken nose, I found not only excruciating pain, but absolutely no muscular strength. By the time I got to the stoplight at the corner, tears were mixing with the blood and I had the unique experience of people doing double takes and moving out of my way with a certain amount of alarm.

“Sue! What happened to you?!” I heard as I stood waiting for the light to change. A man I recognized from the hallways of TPAN, but whose name I didn’t know or couldn’t remember, came rushing up and, along with his friend, fussed over my bleeding face and dysfunctional arm, catching the attention of a Red Cross volunteer who’d been patrolling the sidewalk asking people for donations. All three squired me across the street to Starbucks where Alicia, the Red Cross girl, took me into the restroom and gently washed the blood and asphalt grit off my face. Luckily my nose stopped bleeding profusely and I assured Alicia that I could make it the remaining three blocks home without further assistance.

When I got back outside, I found the other guys waiting, telling me that Derek was on his way from TPAN – Richard (that was the familiar guy’s name I later learned) had called the office and, sure enough, soon Derek came hurrying up, having run out without a coat to come to my rescue.

This was not the first time that Derek had proven to be my hero – it was him and gallant Jeff Berry who’d delivered me to the emergency room in 2008 when my medical odyssey began. Though I was concerned about him freezing, he walked me home, saw me up the stairs, and even poured hydrogen peroxide on my wounds before accepting my down jacket to wear on his walk back to TPAN.

So, like Blanche Dubois, that was definitely a night on which I depended totally on the kindness of strangers and the steadfastness of a good friend. I wish that I could thank that first man personally, that I had the money to give Alicia a donation for the Red Cross, that I could give Richard and his friend a one-armed hug (the arm is slowly recovering), that I could find some way to sufficiently thank Derek for always, unwaveringly being there, not just for me, but for anyone who needs help. I’m afraid all I have is these words, which most of them will probably never see.

But I do believe what goes around comes around and so I hope that they all find their reward in some karmic blessing that lets them know, as they let me know, that there are still kind, gentle, considerate people in this world.]]> Tue, 21 Feb 2012 13:27:00 -0600