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World’s First HIV-To-HIV Kidney Transplant With Living Donor Succeeds

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This article originally appeared in Kaiser Health News.

The world’s first kidney transplant from a living HIV-positive donor to another HIV-positive person was successfully performed Monday by doctors at a Johns Hopkins University hospital.

By not having to rely solely on organs from the deceased, doctors may now have a larger number of kidneys available for transplant. Access to HIV-positive organs became possible in 2013, and surgeries have been limited to kidneys and livers.

“It’s important to people who aren’t HIV-positive because every time somebody else gets a transplant and gets an organ and gets off the list, your chances get just a little bit better,” said Dr. Sander Florman, director of the Recanati/Miller Transplantation Institute at Mount Sinai in New York.

Nina Martinez, 35, is the living donor. She donated her kidney to an anonymous recipient after the friend she had hoped to give it to died last fall. Martinez acquired HIV when she was 6 weeks old through a blood transfusion and was diagnosed at age 8.

In a news conference Thursday, Martinez said that even after her friend died, she wanted to carry on in honoring him by donating her kidney and making a statement.

“I wanted to show that people living with HIV were just as healthy. Someone needed that kidney, even if it was a kidney with HIV. I very simply wanted to show that I was just like anybody else,” said Martinez.

Johns Hopkins said that Martinez was being discharged Thursday from the hospital. The anonymous recipient is in stable condition and will likely be discharged in the next couple of days.

Since 1988, doctors have transplanted at least 1,788 kidneys and 507 livers — both HIV-positive and HIV-negative organs — to patients with HIV, according to the United Network for Organ Sharing, a private nonprofit that manages the nation’s organ transplant waiting list. All the HIV-positive organs came from recently deceased people.

Johns Hopkins Medicine was the first to perform the initial HIV-to-HIV transplant from a deceased donor in the U.S. in 2016.

Dr. Dorrey Segev, one of the Johns Hopkins surgeons who performed the organ transplant, said the surgery was no different than any other live donor transplant that he has done because Martinez’s HIV was so well-controlled by antiretroviral medication. He said Johns Hopkins has already been receiving calls from people living with HIV who want to be living organ donors.

“This is not only a celebration of transplantation, but also HIV care,” said Segev during the news conference.

People living with HIV have faced challenges participating in organ transplants as recipients and donors. Organ transplant centers initially hesitated to give these patients organs for fear of inadvertently infecting them with the virus or accelerating the onset of AIDS in the recipient. Physicians thought the medicines given to prevent organ rejection — which suppress the immune system — could allow HIV to attack more of the body’s cells, unchecked.

Yet, some centers assumed the risks and performed these procedures. “There were no rules,” Florman said. “That was the wild west.”

Transplants slowly increased as more evidence proved liver and kidney recipients with HIV survived at rates similar to patients without the virus. But by the 2000s, the medical community and advocates wanted more. Prospective donors with HIV could not donate their organs, as Congress had banned the practice.

The push for change resulted in the HIV Organ Policy Equity Act, known as the HOPE Act, in 2013. This federal law allowed organ transplants between people with HIV in clinical trials. The legislation drastically cuts the waiting time for recipients with HIV who are willing to accept an organ from a person with the virus from years to months, Florman said. Only patients with HIV are allowed to accept these organs.

Kidney and liver transplants began under the HOPE Act three years after the legislation passed. As of March 24, 116 HOPE Act kidney and liver transplants have taken place.

UNOS does not track HIV status information for transplant candidates on its waiting list. But, as of March 8, 221 registrants have indicated they would be willing to accept a kidney or liver from a donor who has HIV.

Under the HOPE Act, recipients and living donors must meet requirements like undetectable levels of HIV, a normal CD4 count — an important type of white blood cell — and no opportunistic infections. Deceased donors are highly scrutinized to make sure they do not have a strain of HIV that is difficult to manage or treat, Florman said.

Researchers are seeking to expand the HOPE Act protocol to other organs. Dr. David Klassen, the chief medical officer for UNOS, said the Johns Hopkins living donor transplant opens up a promising new avenue for both organ recipients and donors living with HIV.

“As we accumulate more safety data, I think it is possible that the HOPE Act could become a standard of care possibly in the next couple of years,” said Klassen. “At some point, I think this will move into the mainstream.”

Some view the legislation not only as an avenue to advance medicine, but also to challenge how people perceive HIV. The ability to donate an organ implies a certain level of health that was once thought impossible in people living with HIV, said Peter Stock, professor of surgery at the University of California-San Francisco and one of the pioneering surgeons in HIV organ transplants.

“It used to be a death sentence,” he said of HIV. “And now we’re transplanting them.”

Dr. Christine Durand, another Johns Hopkins surgeon involved in the organ transplant, encouraged those living with HIV to sign their organ donor cards and contact their local transplant center if they’re interested in living donation.

“I am hoping this leads to a ripple effect,” said Durand. “And many people with HIV will be inspired to sign up as an organ donor as a result.”

Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.

Victoria Knight and Carmen Heredia Rodriguez contributed to this story.

Kaiser Health News (KHN) is a nonprofit news organization committed to in-depth coverage of health care policy and politics. We offer a number of resources to help you understand what's happening in health policy including email alerts, blog roundups, explainers and videos.

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Study on PrEP Use to Prevent HIV Acquisition Among Transgender MSM

A groundbreaking national study from The Fenway Institute is the first to investigate PrEP use and the risk behaviors that indicate its use to prevent HIV among transgender MSM. Findings indicate that PrEP and other bio-behavioral research on HIV prevention efforts should include this vulnerable group and that they may be being overlooked by medical providers due to a gap in CDC guidelines and research.

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A groundbreaking study from The Fenway Institute published in the most recent issue of Journal of the International AIDS Society is the first to investigate the use of pre‐exposure prophylaxis (PrEP) and the risk behaviors that indicate its use to prevent HIV among transgender MSM (men who have sex with men) nationally. Although HIV infection in the U.S. remains a serious public health concern—particularly among MSM and transgender people—HIV-related research in the transgender community has largely focused on transgender women (those assigned a male sex at birth who have a trans-feminine gender identity). The study’s findings indicate that PrEP and other bio-behavioral research on HIV prevention efforts should include transgender MSM, who are currently excluded from PrEP trials. Additionally, further guidance is required from the US Centers for Disease Control and Prevention (CDC) to inform PrEP continuum and care delivery.

Several studies have shown that transgender women are disproportionately affected by HIV infection relative to their cisgender peers. However, researchers have only recently started to evaluate HIV risk among trans-masculine people who have sex with cisgender men or share needles for hormone or recreational drug use. “Transgender MSM have been invisible in both transgender HIV prevention efforts and in cis MSM prevention delivery;” notes study co-author Dr. Sari Reisner, Director of Transgender Health Research at The Fenway Institute and Assistant Professor of Pediatrics at Harvard Medical School. “Our study suggests that bio-behavioral HIV prevention methods, such as PrEP, should be made available to transgender MSM. Findings support the full inclusion of transgender MSM in biomedical HIV prevention services and research.”

The study, titled “High risk and low uptake of pre‐exposure prophylaxis to prevent HIV acquisition in a national online sample of transgender men who have sex with men in the United States,” was conducted online from November 2017 to December 2017. This national study included 857 transgender MSM between the ages of 18 and 60 (65.3% were under 30). Participants were surveyed to determine their HIV risk, PrEP use, and their bio-behavioral and psychosocial factors (depression, hazardous alcohol and drug use, dating/relationship status, and more). Participants must have self‐reported receptive anal sex or frontal/vaginal sex with a cis male sex partner in the past six months. The racially mixed group was 69.7% white, 25.5% mixed or other racial identity, and 4.8% black. Additionally, 22.1% of all participants reported Latinx heritage. All participants had been assigned female sex at birth and currently identify on the transmasculine spectrum (71.6% as male/transgender man, 28.4% as non-binary, and 32.6% as gay).

The study found that 84% of participants recognized that PrEP use was a way to prevent HIV acquisition. Approximately 55% reported higher risk factors which indicated a greater need for PrEP use. These included where they met their sex partners, not having sex exclusively with cis men, greater number of partners, and high alcohol and drug use. However, only one-third of those in the study had ever taken PrEP.

There could be a number of factors influencing lower PrEP use including a lack of health insurance, poor access to HIV testing, or delays in using prevention methods. Additionally, transgender MSM face the dual stigmas of both gender and sexual minority statuses (with higher levels of stigma for non-binary individuals). As such, they may have unique vulnerabilities that differ from cis MSM. Significant increases in HIV risk were found for those who identified as gay (vs. not), those with mental health and substance abuse issues, those in polyamorous relationships, and those stigmatized by their cis male sex partners.

Since the U.S. Food and Drug Administration approved the first oral drug for PrEP use in 2012, it has proven to be a safe and effective method of HIV prevention. While the CDC has PrEP indication guidelines for several populations in the HIV epidemic, transgender MSM is not one of them. Therefore, it is likely that this vulnerable group is being overlooked by medical providers due to the gap in CDC guidelines and research. This study included a large national sample size of transgender MSM—an at‐risk population about which little is known. Findings clearly show that transgender MSM will not only benefit from access to PrEP but also that HIV prevention research should include this population in future research. The study also demonstrates a need for greater education and public health interventions around the risk factors and vulnerabilities specific to this group.

The study “High risk and low uptake of pre‐exposure prophylaxis to prevent HIV acquisition in a national online sample of transgender men who have sex with men in the United States” is available online.

Source: Press release

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HRC Releases 12th Annual Healthcare Equality Index

The HRC Foundation released its 12th annual Healthcare Equality Index (HEI), which scores health care facilities on policies and practices dedicated to the equitable treatment and inclusion of their LGBTQ patients, visitors and employees.

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The HRC Foundation released its 12th annual Healthcare Equality Index (HEI), which scores health care facilities on policies and practices dedicated to the equitable treatment and inclusion of their LGBTQ patients, visitors and employees.

A record 680 health care facilities actively participated in this year’s survey, and, even as Trump-Pence continue their assault on LGBTQ-inclusive health care, 406 of them received HRC’s coveted “Leader in LGBTQ Health Care Equality” designation after earning a top score of 100. In addition, the HRC Foundation proactively researched key policies at 1,000 non-participating hospitals across the nation.

The 12th edition of the HEI assesses participants on four criteria: Non-Discrimination and Staff Training, Patient Services and Support, Employee Benefits and Policies, and Patient and Community Engagement.

In Texas, only six facilities received the “Leader in LGBTQ Health Care Equality” designation. This compared to the top three states — California with 81 facilities, New York with 74 facilities and neighboring New Jersey with 25 facilities. North Carolina stood out in the South region with 24 facilities earning the top scores.

The main clinic of People’s Community Clinic located in North Austin on Camino La Costa. Photo credit: Studio8 Architects

In Austin, the People’s Community Clinic was the only facility to earned the top score of 100. “At People’s Community Clinic, we not only believe that everyone should be treated with dignity and respect, we make a real effort to ensure that our patients—especially those who identify as LGBTQ—feel welcome,” says the clinic in a Facebook post. This was People’s Community Clinic’s first year on HRC’s HEI.

The only other Austin facility to be rated this year was the Austin/Travis County Health and Human Services Department’s RBJ Health Center. This year, as it did the previous two years, it scored an 80 on the index. The last time the center qualified for the “Leader in LGBTQ Health Care Equality” designation was in 2016.

Metropolitan Methodist Hospital, part of Methodist Healthcare, in San Antonio, Texas. Photo credit: Methodist Healthcare

Metropolitan Methodist Hospital in San Antonio earned the top score for its fourth year in a row. “Our mission statement is serving humanity to honor God by providing exceptional and cost effective health care accessible to all. To the staff at Metropolitan Methodist Hospital this means providing the very best for every patient regardless of their background and we’re very proud of the HEI leader designation which shows our sensitivity, knowledge and commitment to the needs of LGBT patients and community,” said Greg Seiler, CEO at Metropolitan Methodist Hospital.

VA Michael E. DeBakey Medical Center in Houston, Texas. Photo credit: US. Department of Veterans Affairs

The remaining four facilities in Texas were all part of the U.S. Department of Veterans Affairs. The VA El Paso Health Care System in El Paso, the VA Michael E. DeBakey Medical Center in Houston, the VA South Texas Health Care System in San Antonio and the VA Central Texas Veterans Health Care System in Temple all earned the “Leader in LGBTQ Health Care Equality” designation with scores of 100.

The VA South Texas Health Care System in San Antonio, Texas. Photo credit: US. Department of Veterans Affairs

The most improvement came from the VA El Paso Health Care System which went from a score of 35 in the 2017 to a score of 85 in the 2018 index, to a perfect score of 100 this year. The VA Central Texas Veterans Health Care System in Temple went from a score of 65 in 2017 to an 85 in 2018 and a 100 this year. This is Houston’s VA Michael E. DeBakey Medical Center’s second year earning a score of 100 and the VA South Texas Health Care System in San Antonio’s third year.

The VA Central Texas Veterans Health Care System in Temple Texas. Photo credit: US. Department of Veterans Affairs

The release of the 2019 HEI comes as the comment period closes on a regulation proposed by the Department of Health and Human Services (HHS) that would strip away explicit health care protections on the basis of gender identity, effectively targeting transgender and gender non-conforming people’s access to critical care. Under the Obama administration, these landmark protections were added under Section 1557 of the Affordable Care Act, the first time sex was covered as a protected characteristic in health care.

“As the Trump-Pence administration continues to attack the most fundamental rights of LGBTQ people, including rolling back non-discrimination protections in the Affordable Care Act and promoting a license to discriminate in health care, it is more important than ever that health care institutions stand with the LGBTQ community,” said HRC President Alphonso David. “The health care facilities that participate in HRC’s Healthcare Equality Index are making clear that they stand on the side of fairness and are committed to providing inclusive care to their LGBTQ patients. Going beyond inclusive non-discrimination policies, these health care facilities are adopting best practices in the areas of LGBTQ patient care and support, employee policies and benefits, and LGBTQ patient and community engagement. We commend all of the HEI participants for their commitment to providing inclusive care for all.”

Live: HEI Launch Event in Columbus

HRC President Alphonso David launches the organization's Healthcare Equality Index as one of his first acts as president, underscoring HRC’s commitment to quality and inclusive health care for all.

Posted by Human Rights Campaign on Friday, 16 August 2019

In the 2019 report, an impressive 406 facilities earned HRC’s “LGBTQ Health Care Equality Leader” designation, receiving the maximum score in each section and earning an overall score of 100. Another 148 facilities earned the “Top Performer” designation for scoring from 80 to 95 points. With 81% of participating facilities scoring 80 points or more, health care facilities are demonstrating concretely that they are going beyond the basics when it comes to adopting policies and practices in LGBTQ care.

The remarkable progress reflected in the 2019 HEI includes:

  • Over half of HEI participants now have written gender transition guidelines;
  • 75% of hospitals surveyed offer trans-inclusive benefits — an impressive eight percentage point increase over last year, and numbers that bring them on par with their corporate counterparts, as measured by HRC’s 2019 CEI;
  • A 35% increase in training hours recorded — clocking in at more than 94,000 hours of LGBTQ care training provided;
  • A 60% increase in the number of HEI participants whose electronic health records capture a patient’s sexual orientation, and a 40% increase in the number of HEI participants whose electronic health records capture a patient’s gender identity.

Of the 1,000 hospitals that didn’t actively participate in the HEI but were included based on HRC Foundation research, only 67% have patient non-discrimination policies that include both sexual orientation and gender identity, and only 62% were found to have an LGBTQ-inclusive employment non-discrimination policy. The equal visitation policy, in place at 90% of facilities that didn’t actively participate, is the only aspect in which this group comes close to matching the rate of the participating facilities.

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Texas’ Low HPV Vaccination Rates Keeping Cervical Cancer Rates High

The state’s approach stands in stark contrast to that of Australia, where leaders have successfully pushed a nationwide program that has made a sizable dent in cervical cancer rates.

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Only 36% of adolescent boys in Texas were up to date on HPV immunization in 2016, according to federal data. Photo credit: Cooper Neill / The Texas Tribune

This article originally appeared in The Texas Tribune

In 2007, two governments set into motion a massive public health experiment.

One was the state of Texas, where lawmakers rejected a mandate to vaccinate adolescent girls against human papillomavirus, or HPV, a near-ubiquitous sexually transmitted infection that causes cervical cancer. For more than a decade since, the number of Texas adolescents vaccinated against HPV has remained low.

On the other side of the globe, Australia, a country with roughly the same size population and economy as Texas, was taking a radically different approach. Public health leaders there rolled out a nationwide program that offered the HPV vaccine to girls for free at their schools. The program, though optional, proved popular, and it later expanded to boys. Vaccine coverage grew rapidly, with up to 80% of teens becoming immunized over the next decade.

Now, 12 years after Texas and Australia first veered onto wildly different courses regarding HPV prevention, their gap in health outcomes has widened demonstrably. Australia is on track to become the first country to eliminate cervical cancer, perhaps within a decade. Texas, meanwhile, has hardly made a dent in its rate of cervical cancer — which remains one of the highest in the United States, with an incidence comparable to that of some developing countries.

Medical experts in both Texas and Australia say the results underscore the effectiveness of widely available vaccines and cancer screenings.

“From the beginning, I think the [Australian] government successfully positioned the advent of HPV vaccination as a wonderful package that had a beneficial effect for the population,” said Karen Canfell, a cancer epidemiologist with the Cancer Council Australia. “It was celebrated for that reason, and it was a great public health success.”

Related: See Texas vaccine exemption rates by school district or private school

Local cancer experts say Australia seized a golden opportunity Texas missed out on. “They embraced the vaccine at that time, and our fear kind of began around then,” said Lois Ramondetta, a professor of gynecologic oncology at MD Anderson Cancer Center in Houston. “Really, vaccination in general has just gone down the tube since then.”

Texas is at half of Australia’s vaccination rate for adolescents — and is lagging behind most other U.S. states. Only about 40% of Texans between 13 and 17 years old were up to date on their HPV vaccinations in 2017, according to the U.S. Centers for Disease Control and Prevention. That’s compared with the national average of 49%.

Cervical cancer rates remain significantly higher in Texas as well. In 2016, the age-adjusted rate of new cervical cancer cases in the state was 9.2 per 100,000 women, according to the CDC and National Cancer Institute. Women in only four other states — New Mexico, Alabama, Florida and Kentucky — were found more likely to develop cervical cancer.

Because it takes several years for persistent HPV infection to manifest as precancerous lesions on the cervix, not all of Texas’ high cancer rate can be attributed to low vaccine rates. But experts say the best way for the state to significantly reduce its cervical cancer rates is to boost HPV immunization.

Researchers in Australia estimate the country will see fewer than 4 new cases of cervical cancer per 100,000 women each year by 2028, as long as vaccination rates remain high among adolescents and adult women receive regular cancer screenings.

The success of those programs has positioned Australia as the “first country that is likely to eliminate cervical cancer as a public health issue,” researchers wrote in a study published by medical journal The Lancet late last year.

An estimated 99.7% of cervical cancer cases are caused by the group of viruses known as HPV. Cervical cancer is the fourth most commonly occurring cancer in women. Study after study has found the HPV vaccine to be safe and effective.

Some Texas policymakers say it’s time to revisit the state’s vaccination requirements in light of Australia’s success.

“This is a preventable disease, and we should and can be doing more,” said state Rep. Jessica Farrar, a Houston Democrat who has advocated for more robust HPV vaccine coverage. “Here we are 12 years later, and look where we could’ve been, but because of certain beliefs, we’re suffering from cancers that could have been avoided.”

Texas’ last effort to expand HPV vaccine coverage, supported by an unlikely cast of characters, fell wildly short.

“We did not want to be the first”

On a Friday afternoon in February 2007, just months after the U.S. government approved a vaccine to protect adolescent girls against HPV, then-Gov. Rick Perry — a Republican — stunned the political establishment by announcing an executive order: Texas would become the first state in the nation to require all 11- and 12-year-old girls entering the sixth grade to receive the vaccination. Doing so, Perry wrote, had “the potential to significantly reduce cases of cervical cancer and mitigate future medical costs.”

Public health advocates were as elated as they were surprised. Farrar, who had authored a bill that would have similarly required adolescent girls to receive the HPV vaccination, said she was caught unawares by Perry’s proclamation but quickly voiced her support for it. Kathy Miller, executive director of the left-leaning Texas Freedom Network and a veteran of the state’s long-running debate over policies regarding sexual health and education, said she was “completely shocked … but applauded [Perry] for his out-of-character decision to listen to the science and the health care experts.”

Their optimism was short-lived. Pressure from evangelical groups and members of a nascent anti-vaccine political movement to repeal the executive order mounted, while government watchdogs accused the Texas governor of being too cozy with pharmaceutical lobbyists; his former chief of staff, Mike Toomey, had gone on to become a lobbyist for Merck, the manufacturer of the Gardasil HPV vaccine.

Within weeks, Texas lawmakers revolted against Perry’s order — and with support from Democrats and Republicans, the Legislature voted overwhelmingly to torpedo the mandate.

“We did not want to be the first in offering young girls for the experiment to see if this vaccine is effective or not,” state Rep. Dennis Bonnen, the Angleton Republican who authored the bill overturning Perry’s order, told The New York Times. (Bonnen, now the Texas House Speaker, did not respond to emailed questions.)

The blowback would haunt Perry for years. When he unsuccessfully ran for president in 2011, the executive order spawned attacks from primary competitors on the right. Perry ultimately called the order a mistake, saying, “If I had to do it over again, I would have done it differently.”

Lessons from Down Under

Australian leaders took pains to avoid a mandate in their rollout of the vaccine program.

As it is in Texas, HPV vaccination for students in Australia is optional. But unlike Texas, where parents are generally expected to have their children vaccinated on their own time, Australia decided to bring the vaccine directly to the kids — by offering the shots at school.

“Relying on people to go to their pediatricians … it’s harder to reach kids that way,” said Divya Patel, an assistant professor at the University of Texas System Population Health Initiative who has studied HPV vaccination in Texas.

Another reason the Australian schools-based program has been so well-received: It’s free.

“Vaccines in schools is by far the most effective way to do it,” said Ian Frazer, a professor of medicine at the University of Queensland who helped develop the HPV vaccine. “Free public health programs work really well if you publicize them well.”

Medical experts also praise Australia’s national cervical cancer screening program, which maintains a registry of people who have received cervical cancer screenings and encourages women to be tested every five years from age 25 to 74.

Australia faced some initial anti-vaccine opposition to its schools program, but an effective public awareness campaign helped overcome the opposition. Frazer, the Brisbane-based co-creator of the technology behind the HPV vaccine, was named Australian of the Year in 2006 for his research breakthrough. The same year, Janette Howard, the wife of Australia’s prime minister, disclosed that she had survived cervical cancer.

“What I think has been successful here is a pretty good public understanding of the importance of the vaccine and its key role in cancer prevention, not only for girls but also for boys,” said Canfell, the Australian epidemiologist.

The U.S. Centers for Disease Control and Prevention recommends that boys receive the HPV vaccine at age 11 or 12, but boys’ vaccination rates have lagged behind girls’. Only 36% of adolescent boys in Texas were up to date on HPV immunization in 2016, according to federal data.

In 2015, 406 Texas women died of cervical cancer, according to the Texas Department of State Health Services.

The state’s health department acknowledges the effectiveness of the HPV vaccine; a July report from the agency found that the “burden of cervical cancer can be reduced through efforts to screen all women at risk and to increase use of the HPV vaccination.”

The agency actually has the authority to implement a requirement for all students except those with a “conscientious objection” to receive an HPV vaccination before entering the sixth grade.

But a spokesperson for the agency said it typically waits for orders from state lawmakers before changing vaccine rules.

“We’ve also received clear direction from the Legislature that it wants to be involved in decisions about immunization requirements, so outside of an emergency situation, it’s unlikely we’d make a change without legislative action,” agency spokesman Chris Van Deusen said in an email. The most recent change to students’ vaccine requirements, the addition of the meningococcal disease immunization, came in 2013 after the Legislature passed a new law requiring it.

In 2017, researchers from the University of Texas System found the Lone Star State continued to have one of the lowest rates of HPV vaccine coverage in the nation.

“Despite the remarkable cancer prevention opportunity HPV vaccination provides, Texas has fallen behind the rest of the country in adopting this practice,” the researchers wrote.

The Texas Tribune is a nonpartisan, nonprofit media organization that informs Texans — and engages with them – about public policy, politics, government and statewide issues.

Disclosure: The University of Texas System has been a financial supporter of The Texas Tribune, a nonprofit, nonpartisan news organization that is funded in part by donations from members, foundations and corporate sponsors. Financial supporters play no role in the Tribune’s journalism. Find a complete list of them here.

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