U.S. Reps. Barney Frank (D-Mass.) and Tammy Baldwin (D-Wis.) have joined 76 of their House colleagues to sign a petition to President Obama calling for $126 million in emergency funds for the federal AIDS Drug Assistance Program.
The petition, dated May 19, says the emergency supplemental funds are needed to reverse a growing trend among states to put in place waiting lists for the mostly uninsured patients that rely on ADAP to provide their life-saving AIDS drugs.
“It’s abundantly clear that without emergency action, the ability for ADAP programs to provide a safety net for low income and underinsured Americans with HIV/AIDS will be seriously damaged,” says the petition.
Carl Schmid, deputy executive director of the AIDS Institute, a national AIDS advocacy group, said a coalition of AIDS groups has urged the White House and Congress to boost the federal funding allocation for ADAP for more than a year.
“The ADAP problem is getting worse and worse,” he said. “We’re very concerned that the administration and Democratic leaders in Congress are not responding.”
Schmid and officials with other AIDS groups have said the health care reform legislation that Congress approved earlier this year is expected to lessen the need for ADAP. The reform measure will provide health insurance coverage for millions of Americans, including people with HIV and AIDS, who currently can’t afford it.
The new insurance system will include prescription drug plans that cover the expensive anti-retroviral drugs that have been credited with preventing people with HIV from progressing to full blown AIDS.
But AIDS group officials note that the new program won’t go into full effect until 2014, and more than 1,000 people with HIV who can’t afford the drugs are on ADAP waiting lists in at least 11 states.
That number is expected to increase significantly if Congress doesn’t approve an emergency supplemental funding of $126 million for ADAP this year and another increase of $370 million for fiscal year 2011, according to officials with state AIDS offices.
Congress created ADAP in 1987 as part of the sweeping Ryan White AIDS Care Act. It was intended to provide free or low-cost drugs to people with HIV who have limited financial resources and lack health insurance.
The program is structured so that each state and U.S. territory operates an independent ADAP, with the option of supplementing the program with state funds. Most states have added differing amounts of their own funds to the program.
According to the National Alliance of State & Territorial AIDS Directors, Congress appropriated 72 percent of the total ADAP expenditures in 2000. But by 2009, the federal share of ADAP funding dropped to 51 percent, with state budgets and discounts offered by drug companies picking up the balance.
NASTAD said the decline in the federal share of the funding did not occur due to a reduction in federal funds; federal funds for the program continued to rise at a modest pace. The percentage of federal funds declined because the number of new people enrolling in state ADAP programs increased dramatically over the past decade, in part because the effectiveness of the drugs has kept more people with HIV alive.
Additionally, in recent years, the economic recession has resulted in the loss of jobs along with the loss of health insurance coverage for large numbers of Americans with HIV, AIDS group officials have said.
At the same time, the recession has resulted in a dramatic drop in tax revenue for states, forcing most states to put in place large budget cuts. The cuts have hit state health departments, including state funding for ADAP.
The federal government’s failure to increase its share of ADAP funding to cover the large increase in people with HIV enrolling in the program at the same time that states have slashed their ADAP budgets has been the catalyst for a spike in ADAP waiting lists in a growing number of states.
In one case, AIDS activists have said South Carolina sharply cut its ADAP budget, threatening to prevent hundreds of people with HIV in need of AIDS drugs from receiving them. The cuts could lead to the death of people with HIV who might otherwise remain healthy if they had access to the medication.
Earlier this year, a heated dispute surfaced between NASTAD and the AIDS Healthcare Foundation, a national AIDS advocacy group based in Los Angeles, over whether calls for Congress to appropriate more money for ADAP should be linked to demands that pharmaceutical companies provide greater discounts to ADAP for the purchase of expensive AIDS drugs.
Both groups favor an increase in federal funds for ADAP, and both have said they support efforts to negotiate greater price discounts from drug companies for state programs.
But unlike the AIDS Healthcare Foundation, NASTAD and its allies favor lobbying Congress for increased ADAP funds on a separate track from efforts to secure greater price reductions from the drug companies.
Julie Scofield, NASTAD’s executive director, has argued that a coalition of state programs and various AIDS advocacy groups have succeeded in securing significant drug discounts from major pharmaceutical companies.
In a statement sent by e-mail in March to more than 1,000 groups and activists, AIDS Healthcare Foundation officials said federal intervention alone is not sufficient to curtail the ever-accelerating cost of ADAP spending on drugs.
“The undeniable driver of costs in ADAPs is the costs of the medications that are purchased,” says the statement.
It noted California’s ADAP, in which spending for AIDS drugs increased by 165 percent since 2000, while the number of patients served increased by 49 percent.
“This is equivalent to a 77 percent increase in per patient cost of AIDS drugs,” says the statement. “Even with ‘price freezes’ and rebates, the costs of the pharmaceuticals will continue to rise to a level that will bankrupt states, and force major programmatic concessions in eligibility and formulary.”
Among other things, AIDS Healthcare Foundation proposed that for every dollar of federal funds allocated for ADAP, pharmaceutical firms should be required to “contribute two dollars in additional rebate or price cuts.”
As of earlier this week, neither Congress nor the White House had moved forward any of the proposals for supplementing the ADAP budget through a special, emergency funding allocation for fiscal year 2010.
Sens. Tom Coburn (R-Okla.) and Richard Burr (R-N.C.), however, introduced a bill last month calling for extracting the $126 million advocacy groups say is needed for ADAP this year from federal stimulus money approved under President Obama’s economic stimulus legislation.
The White House and Democratic leaders in Congress have yet to officially take a position on the Coburn-Burr bill, but Capitol Hill observers say they don’t expect the president or most Democrats in the House or Senate to support the measure.
The AIDS Healthcare Foundation has endorsed the bill.
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Cases of multi-drug resistant gonorrhea ‘super strain’ multiply
CDC and WHO have once again sounded alarm about STI
The Centers for Disease Control and Prevention along with the World Health Organization are raising red flags for the second time this year as cases multiply of a “super strain” of drug-resistant gonorrhea globally, but particularly among men who have sex with men.
This strain of gonorrhea has been previously seen in Asia-Pacific countries and in the U.K., but not in the U.S. A genetic marker common to two Massachusetts residents and previously seen in a case in Nevada, retained sensitivity to at least one class of antibiotics. Overall, these cases are an important reminder that strains of gonorrhea in the U.S. are becoming less responsive to a limited arsenal of antibiotics.
Gonorrhea is a STI with most people affected between ages 15-49 years. Antimicrobial resistance in gonorrhea has increased rapidly in recent years and has reduced the options for treatment.
Last February, cases of XDR, or “extensively drug resistant,” gonorrhea, are on the rise in the U.S., the CDC said.
Gonococcal infections have critical implications to reproductive, maternal and newborn health including:
- a five-fold increase of HIV transmission
- infertility, with its cultural and social implications
- inflammation, leading to acute and chronic lower abdominal pain in women
- ectopic pregnancy and maternal death
- first trimester abortion
- severe neonatal eye infections that may lead to blindness.
This past January, Fortune reported the U.S. is experiencing “a rising epidemic of sexually transmitted disease,” Dr. Georges Benjamin, executive director of the American Public Health Association, said with some experts referring to the issue as a “hidden epidemic.”
Cases of gonorrhea — an STI that often shows no signs, but can lead to genital discharge, burning during urination, sores, and rashes, among other symptoms — rose by 131 percent nationally between 2009 and 2021, according to public health officials. While rates of STI transmission in the U.S. fell during the early months of the pandemic, they surged later in the year, with cases of gonorrhea and syphilis eventually surpassing 2019 levels, according to the CDC.
EXCLUSIVE: Meet the director of Johns Hopkins Center for Transgender Health
Dr. Fan Liang on politicizing healthcare, fear among patients
The topic of gender affirming healthcare has never attracted more attention or scrutiny, presenting challenges for both patients and providers, including Dr. Fan Liang, medical director of the Johns Hopkins Center for Transgender and Gender Expansive Health and assistant professor of plastic and reconstructive surgery.
Speaking with the Washington Blade by phone last week, Liang shared her perspective on a variety of topics, including her concerns about the ways in which media organizations and others have shaped the discourse about gender affirming care.
Too often, she said, the public is provided incomplete or inaccurate information, framed with politically charged and polarizing language rather than balanced and nuanced reporting for the benefit of audiences who might have little to no familiarity with the topics at hand.
“This is an evolving field that requires input from many different types of specialists,” Liang noted, so one issue comes when providers “start to comment outside of their scope of practice, or extrapolate into everybody’s experience.”
A more intractable and difficult problem, Liang said, is presented by the fact that, “issues with transgender health have really taken center stage with regard to national politics, and as a result of that, the narrative has really been reduced to an unsophisticated representation of what’s going on.”
“I think that is dangerous for patients and for the community that these patients live in and have to work in and survive in because it paints a picture that is really inaccurate,” she said.
Conservative state legislatures across the country have introduced a record number of anti-LGBTQ bills this year, passing dozens, including a slew of anti-trans healthcare restrictions. The Human Rights Campaign reports 35.1 percent of transgender youth now live in states that have passed bans on gender affirming care, many of which carry criminal penalties for providers.
A big part of the Center’s work, Liang told the Blade, involves working closely with trans patients and organizations like Trans Maryland and the Trans Rights Advocacy Coalition “to make sure that the community’s voices are being heard, so that we’re able to represent those interests here.”
She described “a generalized sense of anxiety and fear,” concerns that she said are “pervasive throughout the community,” over “access to surgery and to overall gender healthcare.”
“I get a lot of questions about that,” she said.
While Liang has not yet worked with any patients who traveled to the Center because gender affirming care was banned in the states where they reside, she said, “I do anticipate that will happen in the relatively near future.”
Challenges for clinicians
The political climate “really interferes in physician autonomy and basically using our training and discretion to provide the best therapies that we can,” based on research and evidence-based guidelines from medical organizations on best practices standards of care, Liang said.
“I earnestly believe that people who go into medicine try to do right by their patients and try to provide exceptional care whenever they can,” she said. “When I speak to other providers who are engaged in trans care, the reason they entered the field was because they saw patients that were suffering and had no other providers to go to and they were filling a need that desperately needed to be filled.”
“It is unfortunate that their motives are being misinterpreted, because it is causing significant emotional harm to these providers who are being targeted,” Liang said, noting “there is so much vitriol from the anti-trans side of things,” including “this narrative out there that physicians are providing trans care because of financial reasons or because of some sort of politically motivated, I don’t know, conspiracy.”
The political climate, along with the realities of practicing in this speciality, may threaten to stem the pipeline of new providers whose practice would otherwise include gender affirming care, said Liang, who serves on the interview board for incoming residents who are looking to specialize in plastic surgery.
Many, perhaps even most, she said, are eager to explore transgender care, often because, particularly among young trainees, they are friends with trans and non-binary people. “I don’t know how much of that interest persists as they move through the training pipeline, because — especially if they are at an institution that does provide trans care — they do see a lot of the struggles that physicians encounter in being able to offer these services.”
Liang noted the “significant hurdles from an insurance standpoint” and the “significant prerequisites in order to access surgery,” which require “a tremendous amount of back-end coordination and optimization of the logistics for surgical readiness.”
“And then,” she said, “they see a lot of the backlash in the media against trans providers, and I think that that does discourage residents who otherwise would be interested in the field because physicians, by and large, are a pretty conservative bunch. And having them start their practice where they’re sort of stepping into a political minefield is not ideal.”
Speaking up can be beneficial but risky
“Some physicians feel like they can make the most amount of impact by being advocates for the patient population on a national stage or being more vocal about how anti-trans legislation has been impacting their patients,” Liang said.
“My goal, as the director for the Center for Transgender Health here at Hopkins is really to normalize this care to allow for the open conversation and discussion amongst providers to create a safe space for people to feel comfortable providing this care,” she said.
Destigmatizing gender affirming care and connecting clinicians who practice in this space will help these providers understand they are not “functioning in isolation” and instead are part of “a national effort and a nationally concerted effort toward delivering state-of-the-art health care,” Liang said.
“It’s important,” she said, to “bring the generalized healthcare community to the table in offering these services and have a frank discussion when it comes to education, research and teaching.”
Other providers, however, “do not feel comfortable putting themselves into that place of vulnerability,” Liang said, “and I don’t fault them for it because I personally know people who’ve received death threats and who have been targeted because of what they say to the media,” in many cases because their comments were reported incorrectly or out of context.
In July, Liang participated in an emergency trans rights roundtable on Capitol Hill with representatives from advocacy groups like the Southern Poverty Law Center and the Transgender Law Center, as well as members of Congress including U.S. Reps. Mark Takano (D-Calif.), Barbara Lee (D-Calif.), and Sara Jacobs (D-Calif.).
She told the Blade it was “a really wonderful experience” to “hear the heartfelt stories” of the panelists advocating on behalf of themselves, their friends, and their families, earning the attention of members of Congress.
“I do think advocacy is important,” Liang told the Blade. “I try to make time for it when I can,” she said, “but I have to balance that with all of my other clinical obligations.”
Finding compassion and lowering the temperature
On Aug. 1, The Baltimore Banner reported that the director of the Mayor’s Office of LGBTQ Affairs in Baltimore filed a discrimination complaint with the city’s Office of Equity and Civil Rights against the Hopkins Center for Transgender and Gender Expansive Health. (The story was also published by the Washington Blade, which has a media partnership with the Banner.)
Asked for comment, Liang said “it was an upsetting article to read,” adding, “I was upset that there wasn’t more due diligence done to investigate a little bit further” because instead the article presents “just this one person’s account of things.”
She noted there is “not much I can say from a physician standpoint because everything is contained within HIPAA,” the federal Health Insurance Portability and Accountability Act, which prohibits providers from even acknowledging which patients they may or may not have worked with.
The Banner article underscores the importance of journalists’ obligations to “make sure there is due diligence to confirm sources and make sure things are accurate,” Liang said, including, of course, when covering complicated and politically fraught subjects like gender affirming care.
“On the one hand, it’s really wonderful that there’s a fair amount of press being dedicated to trans issues around the country,” Liang said, but what is “frustrating for me is these conversations always seem to be so loaded and politically charged, and there doesn’t seem to be much space for people to ask earnest and honest questions” without taking heat from either side.
There is “compassion to be offered for patients who are struggling to receive basic health care” as well as for “people who are struggling to understand how this issue is evolving,” those for whom the matter is “uncharted territory” and therefore likely to “cause consternation and fear,” she said.
“Most of the time, the way to overcome” this is to cultivate “relationships with people who do identify as transgender or non-binary” on the grassroots level, she said, while leaving room “for people to ask earnest and honest questions.”
Removing the artificial “us-versus-them” paradigm provides “opportunity for more compassionate interactions,” Liang said.
At the same time, she conceded, amid the heightened polarization and escalation of an anti-trans backlash over the last few years, efforts to fight sensationalization with compassion and understanding have often fallen short, presenting hurdles that have long plagued other areas of science and medicine like abortions and vaccines.
CDC official discusses new STI prevention tool
Dr. Leandro Mena spoke with the Blade on Thursday
The Centers for Disease Control and Prevention is expected to soon issue draft guidelines for the use of doxycycline to help prevent the spread of gonorrhea, chlamydia and syphilis in transgender women and gay and bisexual men who have sex with men.
Doctor Leandro Mena, director of the public health agency’s Division of STD Prevention, talked to the Washington Blade by phone on Thursday about the post-exposure prophylactic intervention — DoxyPEP for short — which he characterized as “the first important innovation that we have had in the field of STIs in almost three decades.”
Studies show a 200 mg dose of the widely available antimicrobial antibiotic, if taken within 72 hours after sex, has shown tremendous efficacy in reducing the risk of transmitting these three diseases, he said.
For now, research is limited to certain LGBTQ populations for whom “we know that network prevalence, the prevalence of STIs in the sexual network of this group, is sufficiently high that the benefits outweigh the potential risks,” Mena said, while “other strategies like the use of condoms, you know, are not really that feasible.”
Research on DoxyPEP conducted and published over the past couple of years has been game-changing, he said, “because it’s an antimicrobial that’s already approved, we know it’s very low-cost, and I think we have the evidence of its effectiveness.”
“Since the development of nucleic acid amplification test — which allows [providers to] diagnose gonorrhea and chlamydia by amplifying nucleic acids, by doing PCR, that really revolutionized access to STI testing — we really haven’t had much,” Mena said.
The CDC expects to work quickly on DoxyPEP, but a few hurdles must be cleared first.
“We have engaged with the communities, right, that are poised to benefit the most from this intervention,” Mena said. “And where we are is that we are finishing our guidance, we anticipate that it will be out for public comment close to the end of this fall, and shortly after we will be able to have the final guidance.”
“Guidelines like these that have important public health consequences goes all the way up to the highest levels of clearance in the CDC,” he added.
“While we know that that benefits are significant, there are some unknowns about the potential risks of taking antimicrobials to prevent infections, as they may perhaps have other effects [like] inducing resistance” in STIs and other types of bacteria, Mena said.
“Those are some of the unknowns that we’re trying to currently understand better, as we try to balance risk and benefits of the use of doxycycline as post exposure prophylaxis,” he said.
Another challenge for the CDC as it develops the guidelines, Mena said: They must be as relevant for folks in San Francisco as for people in Montgomery, Ala., and (the) Navajo Nation, based on each place’s “local epidemiology, local context and population.”
Additionally, the agency warns, doxycycline can carry side effects — namely, “phototoxicity, gastrointestinal symptoms, and more rarely esophageal ulceration.”
So, the CDC is working diligently, Mena said, to “better understand the potential risk that its use – its regular use, in this way, may present to the individual and potentially at the population level.”
Mena called DoxyPEP an “amazing tool,” noting the need for new ways to combat the increase in rates of STIs that has persisted for nearly a decade.
“In 2021, we had more than 2.5 million cases of syphilis, gonorrhea and chlamydia reported, and the reasons we’re seeing these increases, it’s really, you know, multifactorial,” he said. “There are subpopulations that are disproportionately affected — among these, racial-ethnic minorities, young people, men who have sex with men.”
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