+
Sign up for
The Upworthiest
Our top stories of the day delivered straight to your inbox.
upworthy

hiv

Heroes

Doctors just used HIV to cure 'bubble boy' disease.

Remember the Bubble Boy from the '70s?

One of the more famous cases in medical science, David Vetter was born in 1971 with severe combined immunodeficiency (SCID), which made him extremely vulnerable to germs and disease. So, 20 seconds after he was born, he was put into a sealed, plastic chamber. He remained in there until the age of six at which point he was given a plastic suit designed by NASA so he could move around more freely. Still, a plastic shield separated him from the rest of the world until he died at age 12 after a bone marrow transplant, one of the only other known treatments for the disease, failed.

[rebelmouse-image 19470792 dam="1" original_size="353x269" caption="David Vetter in his plastic suit. Photo via Wikimedia Commons." expand=1]David Vetter in his plastic suit. Photo via Wikimedia Commons.

While the bone marrow transplant may have helped, it doesn't cure SCID, and and can even lead to more complications.

Today, however, a true cure for SCID is within reach. And it comes from an usual place — another infamous disease.

According to new research that was developed at a Tennessee hospital, when scientists collected bone marrow from babies with SCID and corrected the defect gene with an altered version of an HIV gene, the disease was eradicated.

Most babies that formerly had the SCID gene were discharged from the hospital after one month, declared SCID-free.

Since then, they appear to be living healthy lives out in the world, free from their confining plastic protection.

"These patients are toddlers now, who are responding to vaccinations and have immune systems to make all immune cells they need for protection from infections as they explore the world and live normal lives," Dr Ewelina Mamcarz of St Jude, an author of the study, said in a statement.

This isn't to say that HIV should now be regarded with reverence, but this medical first just goes to show,  incredible discoveries can be born from anywhere — even a potentially deadly disease.

Heroes

James Corden sent 297 copies of the same movie to Mar-a-Lago to educate Trump about HIV.

The movie "Philadelphia" was one of the first mainstream films to tackle the HIV/AIDS epidemic. That was more than 20 years ago.

The story follows a closeted gay lawyer in, well, Philadelphia who battles discrimination after his employer discovers he has AIDS. At the time, it was groundbreaking and eye-opening for viewers. It's where many learned and understood what it meant to live with HIV/AIDS.

Yet here we are, in 2017, on the heels of an announcement that six of the top advisers on President Trump's HIV/AIDS advisory board have resigned because "The Trump Administration has no strategy to address the on-going HIV/AIDS epidemic."

The president, they said, "simply does not care."

Two steps forward, one step back.

This massive failing by Trump has flown under the radar (see: Russia coverage), but late-night host James Corden had a brilliant plan to change that.

"Most of what I know about HIV and AIDS, I learned from the movie 'Philadelphia,'" Corden said during a segment on "The Late Late Show." "As I learned more, I started to care about it. Maybe that's the problem. Maybe Donald Trump doesn't care because he's never seen 'Philadelphia.'"

The audience laughed, but Corden was only partially joking. He had a great plan for getting the president to actually sit down and watch a movie that should be required viewing for the person in charge of disease research:

He sent as many copies of the movie as he could find directly to Trump.

He explains in the hilarious and powerful clip below:

"HIV and AIDS, it still carries a stigma for many people. And they don't want to talk about it," said Corden, visibly upset.

"And if you don't talk about it, it makes it easy to ignore."

Research and treatment have come a long way, but around 66% of people in the U.S. living with HIV/AIDS are not in treatment. (Globally, about 54% of people have no access to treatment.)

So yes, this is still a huge problem. It deserves to be addressed.

Will Trump actually watch one of the copies of "Philadelphia" that show up addressed to him at Mar-a-Lago? ("The president's never [at the White House]. He's always playing golf!" Corden said.)

Unlikely. But just because the president doesn't care doesn't mean we shouldn't.

There are a lot of scandals and outrages with this Trump administration to talk about, but this is one we shouldn't allow to go unnoticed.

If you want to find out how you can make a difference in fighting HIV/AIDS, start here.

From Your Site Articles
Most Shared

Last year, Sia's manager did something really brave. It inspired her new video.

On June 8, Sia released the video for "Feel Me," an emotional new song with a powerful message in support of a great cause.

Sia is known for unique, visually captivating music videos. Her latest, for a new song called "Feel Me" is all that and important too.

Starring Zoe Saldana with narration by Julianne Moore, the video follows the impassioned journey of a mother-to-be who's just found out that she's HIV-positive.

The video — which was choreographed by Ryan Heffington (who also choreographed videos for "Chandelier," "Cheap Thrills," and "The Greatest") — is the stunning work of art the world has come to expect from Sia. But "Feel Me," and the cause it was made to support, has an important backstory.

The song was inspired by Sia's manager, David Russell, who came out publicly as HIV-positive in a 2016 interview.

Russell's diagnosis in 2002 inspired Sia to become more engaged in HIV-related activism. Over the course of the past 12 years, the two have worked together as manager and client — both watching the other grow in their own ways.

"I've been thrilled to witness Sia's reach grow further and further, all the while using her status as a person of influence for good," Russell writes in an email. "'Feel Me' is a gorgeous record and I'm so happy and proud to work with an artist as generous and open hearted as she is. She makes a difference."

Sia wrote in Billboard that Russell's "transformation of his shame into self acceptance has been magic to watch."

Photo courtesy of David Russell.

A lot has changed for the better since Russell first got his HIV-positive diagnosis.

That's due, in part, to efforts designed to fight HIV stigma — and messages like the one in Sia's "Feel Me" video.

[rebelmouse-image 19530225 dam="1" original_size="500x200" caption="GIF from "Feel Me" by Sia/YouTube." expand=1]GIF from "Feel Me" by Sia/YouTube.

"When I was diagnosed, it was only five or six years after the first round of anti-retrovirals were introduced so concepts like 'undetectable = non-transmission' or regimens like PrEP were either unavailable or not common knowledge," Russel writes. "I’d say the first five years of my living with HIV were at the tail end of the 'panic' years, and as a result I experienced a lot of negativity about my positive status."

Over the past five years or so, preventative treatments like PrEP and a fuller understanding of how and when the virus can be transmitted began making their way into common knowledge. As a result, HIV stigma has started to decline.

Sia during a 2016 concert. Photo by Stuart C. Wilson/Getty Images.

Proceeds from "Feel Me" sales and streams will go toward the #endHIV Campaign's efforts to develop an HIV vaccine.

While HIV isn't anywhere near the death sentence it was in the '80s and '90s, it's still a serious issue without a cure. Nearly 40,000 Americans were diagnosed with HIV in 2015, adding to the more than 1.1 million living with it in the U.S.

"While this is a diagnosis nobody looks forward to it can also be a blessing in disguise," Russell writes when asked what advice he'd offer someone newly diagnosed with the virus. And that's really what the video is about — the scary moment of diagnosis and the flood of emotions that come after.

"Finding out I’m positive led me to look closer at my relationships, my health — both physically and mentally — and challenged me to live my life in the present.  We’ve made such enormous advances medically that anyone diagnosed in 2017 can expect to live a normal life with regular check-ups and adherence to medication."

"Feel Me" is now available on all major streaming and digital platforms. For more information about the #endHIV Campaign, visit the group's website.

Family

'Absolutely devastating': How Trumpcare would affect the fight against HIV.

Matthew Limpede takes a pill that gives him protection, peace of mind, and a reassuring sense of community.

That pill is the drug Truvada, more commonly referred to as "PrEP" (Pre-exposure Prophylaxis). And it's been a game-changer in the fight against HIV/AIDS.

"I think for the whole [gay] community and for me personally, [PrEP has] lifted us up to a place of being more responsible for our own health," Limpede explains.

If taken as directed, PrEP is 99% effective in stopping the transmission of HIV. It's mostly used by HIV-negative men and women who are more at risk of exposure to the virus.

Photo courtesy of Matthew Limpede.

From Limpede's own experiences, the drug isn't just about personal protection, either — it has encouraged more gay and bisexual men to have important conversations about staying safe with their sexual partners, building a sense of openness and honesty within the LGBTQ community. Those conversations have helped destigmatize those who are HIV-positive, too, he says — people who can live long and healthy lives while being sexually active.

The only way Limpede was able to get on PrEP was because of an insurance plan provided through the Affordable Care Act in 2014.

And he's definitely not the only one.

Jim Pickett, director of prevention advocacy and gay men's health at the AIDS Foundation of Chicago, says about 110,000 people across the U.S. started using PrEP between 2012 and February 2017. The ACA played a big role in making that happen.

"PrEP is quite a robust intervention," he says. "It's not just a niche thing for gay men."

Photo illustration by Justin Sullivan/Getty Images.

Making PrEP more accessible has become an increasingly important component of a broader strategy to prevent HIV among groups most vulnerable to the virus, such as transgender women, gay men — particularly gay men of color — and cisgender (non-transgender) black women, according to Pickett.

While PrEP accessibility has grown significantly in the past few years, it's just the tip of the iceberg, Pickett says. About a million more people living at high risk of HIV exposure are good candidates to go on the drug if we can just keep expanding efforts where they're needed most.

Under the current Congress and administration, however, that's shaping up to be quite the tough task.

If the Affordable Care Act is repealed, access to PrEP would take a blow, causing a major setback in our fight against HIV/AIDS.

Image via iStock.

Without health insurance, the price tag for PrEP is about $1,500 a month. With insurance, most people pay between $0 and $500.

Without significant help from an insurer, most Americans can't afford PrEP. Through the ACA's Medicaid expansion, which mostly helped low-income folks — notably, the same groups most affected by HIV/AIDS — PrEP was made accessible in 31 states plus Washington, D.C. Other patients, like Limpede, found the drug was available for free through their ACA plans.

This progress would be reversed under the American Health Care Act, the GOP's plan to "repeal and replace" the Affordable Care Act (aka Obamacare). In the new proposal — one that would cause an estimated 24 million Americans to lose their health care coverage over the next decade — the ACA's Medicaid expansion would phase out. As a result, thousands of people — again, mostly the at-risk groups who desperately need it — would lose access to PrEP.

Photo by Chip Somodevilla/Getty Images.

New HIV diagnoses fell 19% overall from 2005 to 2014, according to the CDC (although progress has been uneven depending on demographics, with some groups seeing increases). With repealing the ACA, we risk reversing this long-term trend.

"If Trumpcare were to be enacted as written, it would be a devastating blow to all of our HIV efforts, both care and prevention," Pickett says. "It would be absolutely devastating."

"If less people are on PrEP, we'll have more HIV infections," Pickett emphasizes. "HIV is forever — that's a cost forever — and that's an increased burden on a system that's overburdened."

Although living a long and healthy life while being HIV-positive is possible, that's only the case for people with access to ongoing health care and treatments that don't come cheap or easy.

For people like Limpede, who has even contemplated moving from Texas to Massachusetts if it means keeping his health care and PrEP access intact, tossing aside life-changing provisions isn't just politics as usual.

It's deeply personal.

"Repealing something like this — that's going to hurt minorities, that's going to hurt people who are low on the socioeconomic scale. It feels very pointed and purposeful," he says. "That's definitely a concern."

Image via iStock.

The HIV/AIDS advocacy community is getting ready for a battle because this is a fight they can't afford to lose.

"The community's main focus now is making sure that Trumpcare does not see the light of day and stopping these harmful provisions in the bill from happening," Limpede says. "We're fighting tooth and nail."

Trending Stories