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08 Harvard Study puts Puerto Rico Hurricane Maria Death Toll in the Thousands

 

Last week, a Harvard T.H. Chan School of Public Health study made headlines by estimating the actual number of deaths in Puerto Rico associated with Hurricane Maria as 4,645. While the official government count, which only includes deaths directly attributable to the storm itself, is just 64 the Harvard study estimated that anywhere between 793 and 8,498 deaths (4,645 is the median between these two figures) were likely caused by the storm, mostly due to delayed medical care stemming from the slow recovery response.

 

While the potential range may be wide, there is additional evidence that the botched response to Maria did lead to large numbers of potentially avoidable deaths, and these other estimates do fall within the range identified by the Harvard researchers. University of Puerto Rico statistician Roberto Rivera, along with colleague Wolfgang Rolke published an analysis in February concluding that in the first six weeks after Hurricane Maria, the death count was between 605 and 1,039. Other researchers have also estimated a death toll in the ballpark of 1,000, including the New York Times. Months ago, the government in Puerto Rico commissioned a study to examine the death toll by the George Washington University Milken Institute School of Public Health. That study is ongoing.

 

Either way, one thing is certain. Hundreds, and potentially thousands of Puerto Ricans died — many unnecessarily — because of a lack of preparedness and a lack of urgency in our nation’s response to the island’s crisis. And while we don’t have specific figures on the number of these deaths related to delayed care involve HIV, we know that Puerto Rico was already struggling to keep up with the need for HIV services before the hurricane. The island has over 20,000 people living with HIV, placing it squarely in the top 10 U.S. states and territories for total HIV cases.  Puerto Rico fares even worse in health outcomes, with the highest HIV death rate in the country. In that environment, it’s hard to imagine a scenario in which major interruptions to medical supply chains and service provision wouldn’t devastate residents living with HIV.

 

We reached out to AIDS United partners working on the island, Anselmo Fonseca and Rosaura López-Fontánez to get their take on these new figures and to give us an update on what they’re seeing on the ground.  Here’s what we heard back:
Recognizing that [Hurricane] Maria was an unprecedented natural disaster, the local, state, and federal governments all share equal negligence for the loss of human life and perpetuated devastation. This was criminal!

– Anselmo Fonseca, President, Pacientes de SIDA pro Política Sana; Chair, Cero VIH Puerto Rico; Ryan White Part-B Community Co-Chair (San Juan, PR)

Hurricane Maria not only devastated our country, she demonstrated to the world and ourselves that our island is a territory controlled by the United States, that has always looked at us with indifferences, with disrespect and consideration at every level.  The survey accomplished by [Harvard]  University…demonstrates a reality that the government of Puerto Rico at 9 months of the passing of Maria continues avoiding.  Hurricane season began on June 1st, and with it, families continue without electricity and a roof over their heads, people living in their vehicles, unattended by the local and federal agencies called to ensure their social welfare… finally they have left us with no hope.

I ask myself: Where are the people that govern my country?  To whose interest do they respond? Why and what are the reasons for their continued indifferences? Puerto Rico continues in national mourning.

– Rosaura López-Fontánez, MSW/LCSW, Executive Director Puerto Rico CoNCRA

Anthony Bourdain’s death is one in a growing public health tragedy

Suicide rates have risen in almost every state in the US in the past two decades.

Between 1999 and 2016, suicide rates rose in nearly every state in the union, with 25 states showing increases of more than 30 percent.
 Slaven Vlasic/Getty Images

The suicide deaths of chef, author, and TV host Anthony Bourdain and fashion designer Kate Spade this week are stories of lives cut short for reasons we’ll never fully understand. But these anecdotes are also a reminder of a serious public health issue in America that needs far more attention.

According to data from the Centers for Disease Control and Prevention, released on June 7, suicide rates have increased significantly across the US. Between 1999 and 2016, suicide rates rose in nearly every state in the union, with 25 states showing increases of more than 30 percent.

The central and northern parts of the US — North Dakota, Wyoming, Montana, Minnesota — saw some of the greatest rises in suicide rates.

Percentage change in annual suicide rate, by state. United States between 1999 to 2001 and 2014 to 2016.
 CDC

In North Dakota, for example, the suicide death rate increased by nearly 60 percent since 1999. Nevada was the one state that saw no increase — but the rate there remained “consistently high throughout the study period.” The suicide rate in Nevada is currently 21 per 100,000 deaths, greater than the national average of 13 deaths per 100,000. (You can see other state-specific rates here.)

In 2016, nearly 45,000 Americans died by suicide — making it the 10th most common cause of death in the US, and one of only three leading causes that are increasing, according to the CDC.

One of the most disturbing aspects of the report: More than half of the people who died by suicide had no known mental health problems. Instead, the CDC said, “Relationship, substance use, health, and job or financial problems are among the other circumstances contributing to suicide.” Also disturbing: 48 percent of the suicides occurred by firearms — another reminder that while the homicides in America’s gun crisis get a lot of public attention, suicides by gun are far more common.

“At what point is it a crisis?” Nadine Kaslow, a past president of the American Psychological Association, asked the Washington Post. “Suicide is a public health crisis when you look at the numbers, and they keep going up. It’s up everywhere. And we know that the rates are actually higher than what’s reported. But homicides still get more attention.”

The majority of the suicide deaths not linked to mental health problems involved midlife white males

The vast majority of suicides that weren’t linked to a known mental health problem in the CDC study involved middle-aged white males — yet another reflection of a growing tragedy in the US.

Life expectancy keeps dropping in the US, and researchers have explained the decline, in part, by an increase in “deaths of despair”: suicides, alcoholism, and drug overdoses, particularly from opioid painkillers, are a rising problem for midlife white people.

Along with worsening job prospects over the past several decades, this group has seen their chances of a stable marriage and family decline, as well as their overall health. To manage their despair about the gap between their hopes and what’s come of their lives, they’ve often turned to drugs, alcohol, and self-harm.

Meanwhile, gains in fighting heart disease have stalled as rates of obesity and diabetes have ploddingly climbed.

So the rise in mortality for white middle age people in America since the late 1990s is actually the final stage of a decades-long process. “It’s about the collapse of white middle class,” Princeton University’s Anne Case told Vox. But the deaths of Spade and Bourdain should remind us that people on even the highest rungs of the socioeconomic ladder are not immune.

Sometimes when we hear a trend is “on the rise,” our brains translate that to “everyone is doing it.” Because we are very sensitive to information about what’s normal, it’s important to note: While suicide is the tenth leading cause of death, it’s still rare, and it ought to be rarer, as I reported with my colleague Brian Resnick.

To prevent suicide deaths, a couple of things are clear: Countries that have made it more difficult to access firearms have seen their suicide rates decline. So the evidence suggests that addressing America’s gun problem would certainly help. The CDC report also calls for a comprehensive approach to prevention, including “strengthening economic supports” through housing and financial policies, and “promoting social connectedness.”

“Suicidologists regularly state that suicide is not caused by a single factor,” the CDC said. And as this new report clearly shows, the causes of suicide are much broader than just mental health conditions. We need suicide prevention policies and strategies that reflect that.


After 37 Years We Can Finally End the HIV Epidemic. The Question Is, Will We?

SLOGAN 1

With one now very big exception, nothing really notable happened on June 5, 1981. The then little-noticed exception was found in the publication of the CDC’s Morbidity and Mortality Weekly Report which noted that a rare form of pneumonia had been diagnosed among five “active homosexuals” in Los Angeles. The report said that the men were treated at 3 different hospitals and that two of the men had died. Three of the men had been previously healthy according to the report.

There was little immediate reaction in the public to the MMWR report here in the United States or around the world. The Associated Press and the Los Angeles Times filed stories about the report on June 5th and the San Francisco Chronicle ran an article on June 6th. This may seem strange today, when “Breaking News” is a daily feature of our lives and social media can make even the smallest news item known worldwide instantly. The New York Times, the “paper of record,” did not do an article following up on the report until a month later, in its July 3rd issue. The Times article reported on what by then were 41 cases of a rare form of cancer among homosexual men in New York and California. Reading the article that day on the eve of the July 4th holiday as a gay man living in New York City, I thought it was a strange story, but had no idea that my world, and indeed the whole world, was about to change drastically. I certainly had no idea that I was witnessing the beginning of what would become one of the worst pandemics in history.

The immediate reaction to the June 5threport was slow but the pace of varied responses and reactions built up quickly. By mid-August Larry Kramer pulled together a group of gay men that raised immediate funds and led to the formation of Gay Men’s Health Crisis (GMHC) in January 1982, the nation’s first community-based AIDS service provider. Along with that activist response, there was fast-growing fear among many gay men, increased stigmatization of gay men and of gay sex (including internalized stigma) and stigmatization of injection drug users and of drug use in general, increased discrimination, and blindness to the impact of the emerging epidemic on women who did not have a history of drug use, gay and bisexual men of color, and other men who have sex with men.

There was also much hope and optimism in those early years that a cure for AIDS would be found quickly. However, the more dominant reaction among the general public and most levels of government was the willful and shameful ignorance of the emerging AIDS epidemic and neglect of, animosity towards, and abhorrence of people living with and dying of the newly recognized disease. The stigma, discrimination, and neglect all but extinguished the hope of a cure inspired by the active and activist response to AIDS. When I was 41 years old and diagnosed with HIV infection in 1989, I was convinced that I would be dead before my 50th birthday.

Hope and optimism in the fight against AIDS and HIV infection was rebounding by the 15th anniversary of the AIDS and HIV pandemic on June 5, 1996. The growing proof of the effectiveness of highly active antiretroviral therapy (HAART) in saving lives of people living with AIDS heralded a new era of HIV treatment. The theme of that year’s International AIDS Conference, “One World, One Hope,” articulated the resurgent optimism.

The revival of hope and optimism was soon challenged by the clear inequities and gaps in access to the new, effective drug therapies and gaps in access to HIV prevention education and services. The themes of the 1998 and 2000 international conferences were “Bridging the Gaps” and “Breaking the Silence.” The June 5th anniversaries of the HIV pandemic were grim reminders of the toll that HIV disease had taken on our lives and on our communities. The light at the end of the tunnel provided by effective treatments was eclipsed by continued stigma, discrimination, and the blatant lack of sufficient political will to conquer HIV infection and disease within governments here in the United States and around the world. Progress and the ensuing hope and optimism were being kept alive by the magnificent courage and determination of people living with and affected by HIV, health care and service providers, HIV-focused researchers, and HIV advocates.

June 5, 2018, the 37th anniversary of the HIV pandemic is now here. We are still counting the years of HIV disease. We have at least two generations of people who have never known a world without AIDS. But we do have the proven and effective treatment and prevention tools to end the HIV epidemic here in the U.S. and globally. We have powerful messages such as “Treatment is Prevention” and “U=U.” I recently celebrated my 70th birthday and I’m more worried about my back than I am about being HIV positive. And I am certainly not the only long-term survivor; there are many thousands of us.

But there is also far too many multiple thousands of people who remain vulnerable to HIV infection or whose HIV infection is undiagnosed or not successfully treated. Yes, there are numerous factors that account for those realities. For me, the salient factor is the continued lack of sufficient political will to end the HIV epidemic. We have a president and an administration that have made little public effort to highlight the priority of ending the HIV epidemic. We have an administration and a congressional majority that work to undermine health care and the various safety nets and entitlement programs that are crucial to Americans, including those of us living with HIV. Thankfully, there are tenacious federal leaders and workers who are moving forward to maintain a strong federal response to HIV. Thankfully, the courage and determination of people living with and affected by HIV, providers, and advocates that have kept hope and optimism alive in the past continue their efforts. But the challenges and barriers posed by the lack of sufficient political will is daunting.

We enter the 38th year of AIDS and HIV still counting. We can end the epidemic, but will we? If the political landscape does not support our efforts, then we must work together to change it; to elect leaders that have the political will to move us forward and not backward. The June 5, 2019 anniversary can be a marker on the countdown to ending the HIV epidemic. Yes, we can. More importantly, we must.

Posted By: Ronald Johnson, Policy Fellow, AIDS United – Monday, June 04, 2018

Patient Advocacy Leadership Summit

Please join us Thursday, March 22, 2018

2:00 PM – 3:15 PM (EDT)

2018 Florida Qualified Health Plan Review

Presenters from The AIDS Institute:

Stephanie Hengst, Senior Policy Associate – HIV/AIDS

Frank Hood, Hepatitis C Policy Associate

Carl Schmid, Deputy Executive Director

Description:

Since 2014, The AIDS Institute has reviewed the Silver-level plans offered on the health insurance marketplace in Florida for cost-sharing and formulary coverage for HIV and Hepatitis B and C drugs. During the webinar, The AIDS Institute will provide an in-depth look at six plans offered on the 2018 marketplace and will summarize benefit design trends as well as specific coverage, cost, and utilization management practices for HIV and HCV drugs for each plan.
In addition, The AIDS Institute’s analysis will include information on whether the plans have instituted copay accumulator programs, which prohibit the use of manufacturer copay cards from being applied to a beneficiary’s deductible and/or maximum out of pocket expenses.

USCA: 2017 “See You in DC!”

 

 

 

 

 

Dear Eric,
This is the final communication prior to seeing everyone at the United States Conference on AIDS. The 2017 meeting has already surpassed the registration numbers from both the 2015 and 2016 conferences. In other words, there will be lots of people. Please be patient and use your time standing in line to meet your colleagues from across the country.

If this is your first time attending USCA, you may be surprised by the diversity of attendees. Typically, 60% of the participants are people of color, 55% are women, 30% are people living with HIV, 75% of the men attending are gay men, and there is a significant delegation from the trans community. USCA strives to have representatives from all 50 states and the territories. In other words, this is a community conference that reflects the full scope of the epidemic. If you’ve never been to USCA, you will quickly see the difference from other conferences. We are proud to offer a safe space for people to be themselves without judgement or discrimination. The 2017 meeting will be a USCA Family Reunion and our family values are built upon diversity, inclusion, and acceptance.

It’s been a challenging time in Washington. I believe that is why this year’s meeting is so important. People are fearful about the future. Between healthcare reform and the possibility of cuts to the federal HIV budget, attendees are seeking answers and community. While we may not have all of the answers, we will definitely have community. This year’s USCA is structured to not only train, but also to remind us why we do the important work that must be done. For many of us, this movement is more than just a job; it’s our life and the lives of our communities. In a world that can be very mean to people who are different, USCA celebrates our strange and wonderful family.

Latest Conference Information
To get the latest information on the meeting, download our smartphone app. It is a virtual portal of session descriptions, social media engagement, and logistic updates you will need to make the most of your conference experience.

Houston & SE Texas
USCA will have a moment during the Opening Plenary to stand-up for Houston and SE Texas. Six weeks after Katrina, NMAC brought a group of donors to New Orleans to see the devastation. As soon as Houston is ready, we intend to work collaboratively with other national organizations to support people living with HIV and HIV services in the region.

Recently, I received an email from Deondre Moore who lives in Houston and I wanted to share a small portion:

“USCA, for me, will hopefully be a time to heal and where I can refocus and get back on track. More importantly, during USCA it will be my first time seeing my mother since before the storm, and I cannot wait.”

After Katrina, we brought a small group of HIV leaders from New Orleans to DC to begin the planning process of moving forward. I remember how grateful they were for the meeting because it was the first time they could take a hot shower. This is another tragedy that we must and will overcome.

Hashtag
Use the hashtag #2017USCA. We’re not looking for stories about NMAC. We want you to tell the stories of people you meet at USCA, people who have committed their lives to ending the epidemic. Help expand the discussion about HIV on social media. Remember to post your photos!

Travel
Most people will arrive at either National Airport or Union Station. The quickest way to the hotel is via metro. The closest Metro stop to the Marriott is Convention Center on the GREEN and YELLOW lines. The Yellow line goes directly to the airport.

Hotel
The 2017 host hotel is the Marriott Marquis, 901 Mass. Ave NW. All of the workshops and plenary sessions and the exhibit hall are here. Unfortunately, the Marriott along with three other conference hotels are sold-out at the conference rate.

 

Registration
Registration starts on Wednesday, September 6th at 4 PM. It will be on the mezzanine level of the Marriott. To be greener and to save money, USCA only prints a “limited” number of program books. However, the full content can only be found online. The conference will have free Wi-Fi so remember to bring your laptop or smartphone.

Other Events
When putting your schedule together for the meeting, think about adding the Opening Reception, Film Screening, and the House Ball by Casa Ruby to your things to do. These are great ways to network with fellow attendees and celebrate the diversity of our movement.

The Opening Reception is on Wednesday, September 6th from 6 PM to 8 PM. It is at the Library of Congress in the James Madison Memorial Building, 101 Independence Ave. SE. The closest subway stop is the Capitol South metro located on the Orange and Blue lines. Congresswoman Maxine Water, Congresswoman Barbara Lee, and Congresswoman Ileana Ros-Lehtinen will be our special guests.

There will be a special screening of Nothing Without Us: The Women Who Will End AIDS on Friday, September 8th at 7 PM in Shaw (meeting level 3 of the Marriott). This 70-minute film reveals that no plan to end the HIV epidemic will be complete until it addresses the complex realities of all women’s lives.

Finally, there is a House Ball produced by Casa Ruby on Saturday, September 7th. The Ball starts at 8 PM in the Marquis Ballroom at the Marriott. It is free for conference attendees, although there is a $25 cover for everyone else. All funds raised go to benefit Casa Ruby. This is a special opportunity to experience the culture and glamour of DC’s trans community.

Thank you for being part of my strange and wonderful family. I look forward to seeing you in DC.

 

Yours in the struggle,

Paul Kawata

 

A Special Note from USCA Media Sponsor FHI 360
Hello USCA Partners,
We are excited to be partnering with FHI 360 again this year to provide you and USCA conference attendees a curated live coverage of experience through their Crowd360 web platform. Through Crowd360, FHI 360 will leverage the 2017 USCA social content being shared over multiple platforms (Twitter, Facebook, Instagram, Blogs, Conference Mobil App, etc.) and curate it into three different delivery vehicles. As in the past, these vehicles include:

2017 USCA Hub – The home for digital content being shared at 2017 USCA.
2017 USCA Daily Delivery – A HTML-based recap of the digital content and conversations taking place the previous day.
2017 USCA Live Social Blog – A crowd-sourced live blog created from live coverage being shared on social media (Twitter, Facebook, Instagram, Conference Mobile App, etc.).

Viral load as low as 400 copies/ml six months after starting ART is associated with a significant ten-year mortality risk

Michael Carter
Published: 05 July 2017

A viral load as low as 400 copies/ml six months after starting HIV therapy is associated with a substantial ten-year mortality risk, investigators from the United States report in the online edition ofAIDS. People with a viral load between 400 and 999 copies/ml had a 20% mortality risk, similar to the 23% risk observed in people with a viral load between 1000 and 4 million copies/ml. In contrast, the mortality risk was only 14% for individuals who rapidly achieved complete viral suppression – a viral load below 20 copies/ml.

“A single viral load measurement collected six months after initiating ART [antiretroviral therapy] remains highly informative regarding the risk of death over 10 years,” write the authors.

The aim of ART is rapid and sustained suppression of viral load to below the limit of detection (between 50 to 20 copies/ml depending on testing assay). Treatment guidelines suggest that viral load should be undetectable six months after the initiation of treatment. Newer antiretroviral drug combinations, especially those containing an integrase inhibitor, suppress viral load more rapidly.

Ongoing low-level viral replication despite therapy is associated with the emergence of drug-resistant virus, causing treatment failure and an increase in the risk of HIV- and non-HIV-related illnesses. Small increases in viral load once complete suppression has been achieved, above the limit of detection on occasional tests, so-called viral load `blips`, do not predict treatment failure and are not problematic. This study looked at the failure of treatment to achieve viral suppression after six months.

Analysing viral load measurements taken six months after ART initiation, a team of US investigators sought to determine the level of low-level viraemia (up to 1000 copies/ml) which was associated with an increased risk of all-cause mortality over ten years.

Their study population consisted of approximately 8000 adults who initiated ART between 1998 and 2014. Study participants were followed until death or for up to ten years.

Median age at baseline was 40 years; 83% of participants were male; 62% were in the men who have sex with men risk group; 45% were white and 12% reported ever injecting drugs. The median pre-ART viral load was 75,000 copies/ml and the median year of ART initiation was 2007. Approximately a third of people had been diagnosed with AIDS before starting treatment.

The median period of follow-up was 6.2 years, during which time there were 863 deaths.

Over half (57%) of viral load measurements six months after starting therapy were below 20 copies/ml, with 15% measured at 1000 copies/ml or higher.

As expected, compared to a viral load below 20 copies/ml, a viral load above 999 copies/ml was strongly associated with an increased risk of all-cause mortality over ten years (HR = 1.96; 95% CI, 1.56-2.46). A slightly increased risk of mortality was discernible at a viral load as low as 130 copies/ml (HR = 1.39; 95% CI, 1.02-1.88).

“While we observed an increased hazard of death with low-level viral loads, discernible at 130 copies/ml,” write the authors, “this association was largely driven by the elevated mortality risk experienced by patients with viral load between 400 and 999 copies/ml.”

The average ten-year mortality risk for people with a viral load below 20 copies/ml was 13%, similar to the 14% risk observed in individuals with a viral load between 20 and 400 copies/ml. The ten-year mortality risk was 20% for people with a viral load between 400 and 999 copies/ml, comparable to the 23% risk for people with a viral load of 1000 copies/ml or higher.

“Low-level viral loads between 400 and 999 copies/ml shortly after starting ART appear to place patients at a significantly higher 10-year risk of death than patients with viral loads under 20 copies/ml, and occurrences of viral loads in this range may need to be treated similarly as viral load that exceed 1000 copies/ml,” conclude the authors. “Given the importance of rapidly achieving virologic suppression after initiating treatment, further investigation of the causes of unsuppressed viral loads between 400 and 999 copies/ml is warranted.”

The authors suggest that incomplete viral suppression six months after starting treatment may be a marker for several problems. Apart from lack of adherence to treatment or poor retention in care, incomplete viral suppression might be a consequence of undetected drug resistance, or of drug-drug interactions that lead to low levels of antiretroviral drugs. Planning in advance to prevent these problems from undermining treatment, and prompt investigation of any problems, are likely to improve the chances of viral suppression