PEPFAR MythBusters: Episode Two

Healy Thompson

Yesterday, I blogged about how PEPFAR's Third Annual Report to Congress reveals that the United States is not doing as much on treatment in the 15 focus countries as many believed it was. I combated the myth that PEPFAR (the President's Emergency Plan for AIDS Relief) is providing treatment for 822,000 people.

Today, I combat another treatment myth—that generics account for 70% of PEPFAR's expenditure on anti-retroviral AIDS drugs. And I take issue with the argument that since the abstinence-until-marriage spending requirement is "only one-third of the prevention budget, it really isn't that big of a problem."

Yesterday, I blogged about how PEPFAR's Third Annual Report to Congress reveals that the United States is not doing as much on treatment in the 15 focus countries as many believed it was. I combated the myth that PEPFAR (the President's Emergency Plan for AIDS Relief) is providing treatment for 822,000 people.

Today, I combat another treatment myth—that generics account for 70% of PEPFAR's expenditure on anti-retroviral AIDS drugs. And I take issue with the argument that since the abstinence-until-marriage spending requirement is "only one-third of the prevention budget, it really isn't that big of a problem."

Myth: Generic drugs now make up 70% of the PEPFAR expenditure of ARVs (antiretroviral drugs).

Reality Check: In FY2006, generics accounted for 27% of the money spent by PEPFAR in the 15 focus countries on antiretroviral drugs.

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Where did the myth come from? From unclear charts in a PEPFAR report in May of 2006.

In May 2006, PEPFAR released a report entitled Bringing Hope: Supplying Antiretroviral Drugs for HIV/AIDS Treatment. Figures on pages 9 and 10 indicate the percentage of "FDA-approved generic products" of total procurement in the focus countries. The figures show this number to be 70%. A footnote for the chart on page 9 says that "FY06 data represents a limited sample of four respondents." The larger chart on page 10 includes no such footnote, so anyone looking only at that chart (which is also easier to read for many people because it's a pie chart instead of a line graph) would not know that the 70% figure represented only four "respondents."

(It's not clear from the footnote or the surrounding text whether "respondents" means countries or programs in countries. However, a chart on page 10 of Bringing Hope, shows generic drugs percentages for three countries—Haiti, Nigeria, and Zambia—and these are the three countries that a November 2006 Boston Globe article reported as having 70% generics.)

Poorly footnoted figures aren't the only thing to blame for the confusion on generics numbers. There is also the issue of what the numbers are a percentage of. That is, what "total procurement" are we talking about? And that's a question I can't figure out the answer to based on the information in the reports. The figure that included 70% was based on a "total procurement" of the ARVs pot that was expected to be $279 million for FY06 (see page 1 of Bringing Hope). However, the numbers in the annual report (where the 27% generics number came from) indicate that PEPFAR spent $109.8 million in FY06 (fiscal year 2006) to procure ARVs.

While there are certainly questions to be answered about what that 70% figure really referred to, the fact of the matter is that for more than half a year advocates and the media praised PEPFAR for its major scaling up of generic drugs in the programs it is funding. The 2007 annual report to Congress shows that the "major scale-up" has not been very major. The U.S. is only spending 27% of its spending on antiretroviral drugs on generic drugs.

Myth: "Abstinence-until-marriage is only a third of the prevention budget so it's not that big of a problem."

Reality Check: As CHANGE (Center for Health and Gender Equity) has said for some time now, the question shouldn't be what percentage of the total prevention budget is going to abstinence-until-marriage programs but what percentage of the budget for the prevention of the sexual transmission of HIV is going to abstinence-until-marriage programs. Since 40% of the prevention budget in FY2006 went to preventing the non-sexual transmission of HIV (prevention of mother-to-child transmission and preventing the medical transmission of HIV), this is a crucial distinction.

In FY2006, one-third of the total prevention budget went to meeting the abstinence-until-marriage earmark and those programs represented 56% of the prevention of sexual transmission budget. Other programs to prevent the sexual transmission of HIV accounted for just 44% of the budget for the prevention of sexual transmission of HIV and just 27% of the total prevention budget.

PEPFAR refers to this other prevention of sexual transmission money as "Condoms and Related Prevention Activities," however this is a misnomer intended to mislead Congress, the media and members of the advocacy community. Footnote number 2 on page 38 of the annual report explains briefly what that category includes:

"Examples include mass media and community outreach programs to promote avoidance of or reduction of HIV risk behavior, community mobilization for HIV testing, and the social marketing or promotion of condoms, including work with high-risk groups such as injecting drug users, men who have sex with men, people in prostitution and their clients, and people living with HIV or AIDS."

So, the category "Condoms and Related Prevention Activities" actually includes a lot of programs that aren't condom education and distribution or even necessarily related to condoms. Also, the U.S. requires that …

"… [f]or programs that include a ‘C' component, information about the correct and consistent use of condoms must be coupled with information about abstinence as the only 100 percent effective method of eliminating risk of HIV infection; and the importance of HIV counseling and testing, partner reduction, and mutual faithfulness as methods of risk reduction."

(That's from the PEPFAR ABC Guidance.)

So, whereas it has been argued that the earmark is only one-third of prevention money, we see that when taken as a share of prevention of the sexual transmission of HIV (which is all abstinence-until-marriage is used for), abstinence-until-marriage programs (which are really abstinence-only-until-marriage programs) account for 56% of funding. Only 44% of the budget for prevention of the sexual transmission and 27% of the total prevention budget goes to non-abstinence-only-until-marriage responses to the sexual transmission of HIV even though sexual transmission accounts for 80% of all new HIV infections.

Intrigued by my reporting on the PEPFAR report to Congress? Check out www.pepfarwatch.org for more information about PEPFAR. You can also visit www.pepfar.gov/progress for more of PEPFAR's public reports.

Commentary Sexual Health

Parents, Educators Can Support Pediatricians in Providing Comprehensive Sexuality Education

Nicole Cushman

While medical systems will need to evolve to address the challenges preventing pediatricians from sharing medically accurate and age-appropriate information about sexuality with their patients, there are several things I recommend parents and educators do to reinforce AAP’s guidance.

Last week, the American Academy of Pediatrics (AAP) released a clinical report outlining guidance for pediatricians on providing sexuality education to the children and adolescents in their care. As one of the most influential medical associations in the country, AAP brings, with this report, added weight to longstanding calls for comprehensive sex education.

The report offers guidance for clinicians on incorporating conversations about sexual and reproductive health into routine medical visits and summarizes the research supporting comprehensive sexuality education. It acknowledges the crucial role pediatricians play in supporting their patients’ healthy development, making them key stakeholders in the promotion of young people’s sexual health. Ultimately, the report could bolster efforts by parents and educators to increase access to comprehensive sexuality education and better equip young people to grow into sexually healthy adults.

But, while the guidance provides persuasive, evidence-backed encouragement for pediatricians to speak with parents and children and normalize sexual development, the report does not acknowledge some of the practical challenges to implementing such recommendations—for pediatricians as well as parents and school staff. Articulating these real-world challenges (and strategies for overcoming them) is essential to ensuring the report does not wind up yet another publication collecting proverbial dust on bookshelves.

The AAP report does lay the groundwork for pediatricians to initiate conversations including medically accurate and age-appropriate information about sexuality, and there is plenty in the guidelines to be enthusiastic about. Specifically, the report acknowledges something sexuality educators have long known—that a simple anatomy lesson is not sufficient. According to the AAP, sexuality education should address interpersonal relationships, body image, sexual orientation, gender identity, and reproductive rights as part of a comprehensive conversation about sexual health.

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The report further acknowledges that young people with disabilities, chronic health conditions, and other special needs also need age- and developmentally appropriate sex education, and it suggests resources for providing care to LGBTQ young people. Importantly, the AAP rejects abstinence-only approaches as ineffective and endorses comprehensive sexuality education.

It is clear that such guidance is sorely needed. Previous studies have shown that pediatricians have not been successful at having conversations with their patients about sexuality. One study found that one in three adolescents did not receive any information about sexuality from their pediatrician during health maintenance visits, and those conversations that did occur lasted less than 40 seconds, on average. Another analysis showed that, among sexually experienced adolescents, only a quarter of girls and one-fifth of boys had received information from a health-care provider about sexually transmitted infections or HIV in the last year. 

There are a number of factors at play preventing pediatricians from having these conversations. Beyond parental pushback and anti-choice resistance to comprehensive sex education, which Martha Kempner has covered in depth for Rewire, doctor visits are often limited in time and are not usually scheduled to allow for the kind of discussion needed to build a doctor-patient relationship that would be conducive to providing sexuality education. Doctors also may not get needed in-depth training to initiate and sustain these important, ongoing conversations with patients and their families.

The report notes that children and adolescents prefer a pediatrician who is nonjudgmental and comfortable discussing sexuality, answering questions and addressing concerns, but these interpersonal skills must be developed and honed through clinical training and practice. In order to fully implement the AAP’s recommendations, medical school curricula and residency training programs would need to devote time to building new doctors’ comfort with issues surrounding sexuality, interpersonal skills for navigating tough conversations, and knowledge and skills necessary for providing LGBTQ-friendly care.

As AAP explains in the report, sex education should come from many sources—schools, communities, medical offices, and homes. It lays out what can be a powerful partnership between parents, doctors, and educators in providing the age-appropriate and truly comprehensive sexuality education that young people need and deserve. While medical systems will need to evolve to address the challenges outlined above, there are several things I recommend parents and educators do to reinforce AAP’s guidance.

Parents and Caregivers: 

  • When selecting a pediatrician for your child, ask potential doctors about their approach to sexuality education. Make sure your doctor knows that you want your child to receive comprehensive, medically accurate information about a range of issues pertaining to sexuality and sexual health.
  • Talk with your child at home about sex and sexuality. Before a doctor’s visit, help your child prepare by encouraging them to think about any questions they may have for the doctor about their body, sexual feelings, or personal safety. After the visit, check in with your child to make sure their questions were answered.
  • Find out how your child’s school approaches sexuality education. Make sure school administrators, teachers, and school board members know that you support age-appropriate, comprehensive sex education that will complement the information provided by you and your child’s pediatrician.

School Staff and Educators: 

  • Maintain a referral list of pediatricians for parents to consult. When screening doctors for inclusion on the list, ask them how they approach sexuality education with patients and their families.
  • Involve supportive pediatricians in sex education curriculum review committees. Medical professionals can provide important perspective on what constitutes medically accurate, age- and developmentally-appropriate content when selecting or adapting curriculum materials for sex education classes.
  • Adopt sex-education policies and curricula that are comprehensive and inclusive of all young people, regardless of sexual orientation or gender identity. Ensure that teachers receive the training and support they need to provide high-quality sex education to their students.

The AAP clinical report provides an important step toward ensuring that young people receive sexuality education that supports their healthy sexual development. If adopted widely by pediatricians—in partnership with parents and schools—the report’s recommendations could contribute to a sea change in providing young people with the care and support they need.

Culture & Conversation Human Rights

Let’s Stop Conflating Self-Care and Actual Care

Katie Klabusich

It's time for a shift in the use of “self-care” that creates space for actual care apart from the extra kindnesses and important, small indulgences that may be part of our self-care rituals, depending on our ability to access such activities.

As a chronically ill, chronically poor person, I have feelings about when, why, and how the phrase “self-care” is invoked. When International Self-Care Day came to my attention, I realized that while I laud the effort to prevent some of the 16 million people the World Health Organization reports die prematurely every year from noncommunicable diseases, the American notion of self-care—ironically—needs some work.

I propose a shift in the use of “self-care” that creates space for actual care apart from the extra kindnesses and important, small indulgences that may be part of our self-care rituals, depending on our ability to access such activities. How we think about what constitutes vital versus optional care affects whether/when we do those things we should for our health and well-being. Some of what we have come to designate as self-care—getting sufficient sleep, treating chronic illness, allowing ourselves needed sick days—shouldn’t be seen as optional; our culture should prioritize these things rather than praising us when we scrape by without them.

International Self-Care Day began in China, and it has spread over the past few years to include other countries and an effort seeking official recognition at the United Nations of July 24 (get it? 7/24: 24 hours a day, 7 days a week) as an important advocacy day. The online academic journal SelfCare calls its namesake “a very broad concept” that by definition varies from person to person.

“Self-care means different things to different people: to the person with a headache it might mean a buying a tablet, but to the person with a chronic illness it can mean every element of self-management that takes place outside the doctor’s office,” according to SelfCare. “[I]n the broadest sense of the term, self-care is a philosophy that transcends national boundaries and the healthcare systems which they contain.”

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In short, self-care was never intended to be the health version of duct tape—a way to patch ourselves up when we’re in pieces from the outrageous demands of our work-centric society. It’s supposed to be part of our preventive care plan alongside working out, eating right, getting enough sleep, and/or other activities that are important for our personalized needs.

The notion of self-care has gotten a recent visibility boost as those of us who work in human rights and/or are activists encourage each other publicly to recharge. Most of the people I know who remind themselves and those in our movements to take time off do so to combat the productivity anxiety embedded in our work. We’re underpaid and overworked, but still feel guilty taking a break or, worse, spending money on ourselves when it could go to something movement- or bill-related.

The guilt is intensified by our capitalist system having infected the self-care philosophy, much as it seems to have infected everything else. Our bootstrap, do-it-yourself culture demands we work to the point of exhaustion—some of us because it’s the only way to almost make ends meet and others because putting work/career first is expected and applauded. Our previous president called it “uniquely American” that someone at his Omaha, Nebraska, event promoting “reform” of (aka cuts to) Social Security worked three jobs.

“Uniquely American, isn’t it?” he said. “I mean, that is fantastic that you’re doing that. (Applause.) Get any sleep? (Laughter.)”

The audience was applauding working hours that are disastrous for health and well-being, laughing at sleep as though our bodies don’t require it to function properly. Bush actually nailed it: Throughout our country, we hold Who Worked the Most Hours This Week competitions and attempt to one-up the people at the coffee shop, bar, gym, or book club with what we accomplished. We have reached a point where we consider getting more than five or six hours of sleep a night to be “self-care” even though it should simply be part of regular care.

Most of us know intuitively that, in general, we don’t take good enough care of ourselves on a day-to-day basis. This isn’t something that just happened; it’s a function of our work culture. Don’t let the statistic that we work on average 34.4 hours per week fool you—that includes people working part time by choice or necessity, which distorts the reality for those of us who work full time. (Full time is defined by the Internal Revenue Service as 30 or more hours per week.) Gallup’s annual Work and Education Survey conducted in 2014 found that 39 percent of us work 50 or more hours per week. Only 8 percent of us on average work less than 40 hours per week. Millennials are projected to enjoy a lifetime of multiple jobs or a full-time job with one or more side hustles via the “gig economy.”

Despite worker productivity skyrocketing during the past 40 years, we don’t work fewer hours or make more money once cost of living is factored in. As Gillian White outlined at the Atlantic last year, despite politicians and “job creators” blaming financial crises for wage stagnation, it’s more about priorities:

Though productivity (defined as the output of goods and services per hours worked) grew by about 74 percent between 1973 and 2013, compensation for workers grew at a much slower rate of only 9 percent during the same time period, according to data from the Economic Policy Institute.

It’s no wonder we don’t sleep. The Centers for Disease Control and Prevention (CDC) has been sounding the alarm for some time. The American Academy of Sleep Medicine and the Sleep Research Society recommend people between 18 and 60 years old get seven or more hours sleep each night “to promote optimal health and well-being.” The CDC website has an entire section under the heading “Insufficient Sleep Is a Public Health Problem,” outlining statistics and negative outcomes from our inability to find time to tend to this most basic need.

We also don’t get to the doctor when we should for preventive care. Roughly half of us, according to the CDC, never visit a primary care or family physician for an annual check-up. We go in when we are sick, but not to have screenings and discuss a basic wellness plan. And rarely do those of us who do go tell our doctors about all of our symptoms.

I recently had my first really wonderful check-up with a new primary care physician who made a point of asking about all the “little things” leading her to encourage me to consider further diagnosis for fibromyalgia. I started crying in her office, relieved that someone had finally listened and at the idea that my headaches, difficulty sleeping, recovering from illness, exhaustion, and pain might have an actual source.

Considering our deeply-ingrained priority problems, it’s no wonder that when I post on social media that I’ve taken a sick day—a concept I’ve struggled with after 20 years of working multiple jobs, often more than 80 hours a week trying to make ends meet—people applaud me for “doing self-care.” Calling my sick day “self-care” tells me that the commenter sees my post-traumatic stress disorder or depression as something I could work through if I so chose, amplifying the stigma I’m pushing back on by owning that a mental illness is an appropriate reason to take off work. And it’s not the commenter’s fault; the notion that working constantly is a virtue is so pervasive, it affects all of us.

Things in addition to sick days and sleep that I’ve had to learn are not engaging in self-care: going to the doctor, eating, taking my meds, going to therapy, turning off my computer after a 12-hour day, drinking enough water, writing, and traveling for work. Because it’s so important, I’m going to say it separately: Preventive health care—Pap smears, check-ups, cancer screenings, follow-ups—is not self-care. We do extras and nice things for ourselves to prevent burnout, not as bandaids to put ourselves back together when we break down. You can’t bandaid over skipping doctors appointments, not sleeping, and working your body until it’s a breath away from collapsing. If you’re already at that point, you need straight-up care.

Plenty of activities are self-care! My absolutely not comprehensive personal list includes: brunch with friends, adult coloring (especially the swear word books and glitter pens), soy wax with essential oils, painting my toenails, reading a book that’s not for review, a glass of wine with dinner, ice cream, spending time outside, last-minute dinner with my boyfriend, the puzzle app on my iPad, Netflix, participating in Caturday, and alone time.

My someday self-care wish list includes things like vacation, concerts, the theater, regular massages, visiting my nieces, decent wine, the occasional dinner out, and so very, very many books. A lot of what constitutes self-care is rather expensive (think weekly pedicures, spa days, and hobbies with gear and/or outfit requirements)—which leads to the privilege of getting to call any part of one’s routine self-care in the first place.

It would serve us well to consciously add an intersectional view to our enthusiasm for self-care when encouraging others to engage in activities that may be out of reach financially, may disregard disability, or may not be right for them for a variety of other reasons, including compounded oppression and violence, which affects women of color differently.

Over the past year I’ve noticed a spike in articles on how much of the emotional labor burden women carry—at the Toast, the Atlantic, Slate, the Guardian, and the Huffington Post. This category of labor disproportionately affects women of color. As Minaa B described at the Huffington Post last month:

I hear the term self-care a lot and often it is defined as practicing yoga, journaling, speaking positive affirmations and meditation. I agree that those are successful and inspiring forms of self-care, but what we often don’t hear people talking about is self-care at the intersection of race and trauma, social justice and most importantly, the unawareness of repressed emotional issues that make us victims of our past.

The often-quoted Audre Lorde wrote in A Burst of Light: “Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.”

While her words ring true for me, they are certainly more weighted and applicable for those who don’t share my white and cisgender privilege. As covered at Ravishly, the Feminist Wire, Blavity, the Root, and the Crunk Feminist Collective recently, self-care for Black women will always have different expressions and roots than for white women.

But as we continue to talk about self-care, we need to be clear about the difference between self-care and actual care and work to bring the necessities of life within reach for everyone. Actual care should not have to be optional. It should be a priority in our culture so that it can be a priority in all our lives.