The COVID Vaccine in Under-Served Communities

We are still in the early days of making sure we get the vaccine to all communities in Los Angeles, and are sharing our tool with community groups, churches, and other key stakeholders to meet this goal. WeHealth’s mission is to use digital tools to increase the diversity of clinical trials. Historically clinical trials have been predominantly white, and do not reflect the communities where treatments are typically used. We are seeing this same inequity play out again with vaccine distribution:

It isn’t enough to call out the inequities or even set aside doses for under-served communities. In order to make vaccine distribution truly equitable, we must engage community leaders and empower them to mobilize vaccinations in their community in real-time.

We have partnered with several of these community leaders and, rather than building the tools that we think they need to make this happen, we are asking them what they need. By creating free tools for Angelinos, by Angelinos, we can get LA vaccinated quickly and equitably, and bring this beautiful city back to life. 

If you are interested in working with us or have an idea for a tool or app that would make it easier for you to mobilize your community to vaccinate, let me know at will@wehealth.io

COVID Vaccine Signup Launch

About

We are excited to partner with Vaccinesignup.org to launch a new tool streamlining the process of getting a vaccine appointment in LA County! Check out their post here: https://arye.substack.com/p/vaccine-sign-up-launch

Vaccinesignup is a query tool (@vaccinesignup) that shares the latest vaccine appointments in LA county near you. Since we all know that the LA County appointment finder tool is extremely hard to navigate and fragmented, we ended up building a site that parses vaccine availability in LA County and displays it for easy navigation.

For additional support visit: Vaccinate CA

Sources

• Vaccinate LA County

Contact Us

This project is maintained by WeHealth, who can be reached at support@wehealth.io.

GWI Newsletter – 11/23/20

DESERT STORM MASSACHUSETTS We’re Happy You’re Here. Celebrating the 30th Anniversary, we honor our service and heroism as a community built by Veterans, for Veterans in Massachusetts! New Resources for You Thanks to our community’s inputs, we’ve added three new verified resources for Desert Storm veterans and their families in Massachusetts. View Resources Desert Storm…

Fighting for Gulf War veterans

For far too many of our veterans, the fight doesn’t end when they return from military deployment. 700,000 men and women fought on behalf of the United States in the Gulf War from 1990-1991, and almost 1/3 of them continue to fight the symptoms of Gulf War Illness (GWI), a tragically misunderstood disease arising from the conditions that they were exposed to during the war.

Shortly after completing their deployment, many veterans began experiencing chronic, unexplained symptoms, such as aches, pain, fatigue, skin abnormalities, cognitive and memory problems, including early signs of ALS and Alzheimer’s Disease. Unfortunately, these veterans’ disabilities were not recognized by the Department of Veterans Affairs (VA) until 24 years later, when they published a report recognizing the poorer health experienced by veterans deployed to the Persian Gulf relative to other veterans.

Recognition is only the start of the process towards healing for our veterans. Fortunately, the Gulf War Illness Research Program (GWIRP) has been instrumental in advocating for veterans with GWI, funding $22 million in research annually toward finding treatments for the disease. The tide is truly turning for our veterans in need.

However, outreach has become a major barrier – this is where you come in. Many of the programs funded by the GWIRP are struggling to connect with veterans, stifling research and putting this funding in danger of being wasted. You can help by clicking the link below and sharing this info with the veterans that you know and love:

https://wehealth.io/help-veterans

How you can fight for health equity

WeHealth empowers patients to reach into their own communities and connect their peers with health resources. As they share, we show a map of how that message has spread through their network, so they can visualize when they help a patient, even if that patient is a friend of a friend of a friend. This makes advocacy more accessible, enabling a large group of people to share clinical trial info in a short period of time and reach underserved patients.

We are launching a campaign to reach African-American, Asian, and Hispanic Diabetics. Check out our how-to video below to see how it all works!

WeHealth Mission – YOUTUBE (3min)

Racing Against Death

Photo Credit: E. Jason Wambsgans / Chicago Tribune

Laine VanHoutan, a posterchild for kids around the world fighting Batten Disease, died at the tender age of 12 – but not before helping usher in the first treatment for her disease, one that may help prevent a similar fate for her peers.

Laine and 64 children who contributed to the clinical trial for this new treatment, Brineura, are true heroes. But they also highlight a tragedy in medicine. 95% of rare diseases are untreated – Batten Disease has a 100% fatality rate with an average lifespan of just 12 years old – and many rare diseases are not diagnosed until irreversible damage sets in.

Moreover, due to its rarity – Batten Disease only affects 2 in 100,000 kids – it is very difficult to find enough patients just to test whether a promising drug works. If we can figure out how to diagnose children with rare disease earlier before irreversible damage sets in, we can potentially save children like Laine.

I’ve always disliked the term “Rare Disease” because, as a whole, these patients are everywhere. Do you know somebody with rare disease? How about somebody who is left handed? 1 in 10 people has a rare disease. That’s the exact same proportion that is left handed! There are over 7,000 rare diseases so, while each one may be rare on it own, many of us are silently fighting a rare disease.

The good news: You can help.

We started WeHealth to tackle some of the issues facing Laine and others with rare disease. A major issue is the diagnosis problem. Many rare diseases begin showing symptoms long before patients end up in the hospital. For instance, children with Batten Disease may exhibit learning impairment, clumsiness, and seizures years before a diagnosis.

We work with advocacy groups to identify these symptoms and ask you get them out on your social networks. You may have friends whose kid matches these symptoms or you may know a healthcare worker who sees lots of these kids but hasn’t heard of Batten Disease (with 7,000 rare diseases, it is very common for this to be the case).

Sharing this information can easily save a life. Check out our new campaign to help rare disease patients and help with a few clicks:

wehealth.io/intro/12/

WeHealth’s Mission (VIDEO)

We just posted our explainer video on YouTube. Check it out:

WeHealth Explainer Video

The average rare disease patient searches 7 years for a diagnosis, during which they feel like they are on an island, isolated from communities and doctors.

What if you could help? Not by donating time and money, but by putting your social networks to work, finding patients with just one click and getting them off that island.

WeHealth is built on the idea that we’re all 6 degrees separated from each other (new research indicates that it’s now 4). When you share with your friends, our powerful crowdsourcing tech – developed at MIT – helps accelerate that share across each degree so that it reaches the patients in need.

We provide messages that help patients get diagnosed. We give you tools to share our advocacy message on social media or directly message your friends.

You earn points by completing tasks and recruiting your friends to join the advocacy campaign. You earn bonuses every time your recruits’ complete tasks, so keep them engaged! We track how each share progresses and reward you as it gets closer to the patients in need.

We can’t wait for you to become an advocate on WeHealth!

Searching for a rare disease diagnosis

There’s a great podcast on NPR’s This American Life that I heard recently called “Do These Genes Make Me Look Fatless?” This podcast describes the diagnosis journey of Julie Viles, a wheelchair-bound Iowa mother with almost no muscle mass, who was convinced that she shared a mutation with Olympic sprinter, Priscilla Lopes-Schliep.

Despite the obvious differences between the two (see above picture), Jill saw a similarity that she couldn’t ignore. Says Jill, “It was just unmistakable. It’s like a computer that could analyze a photograph and get a match, and be 100% sure that’s the same shoulder. That’s the same upper arm. I see the same veins. I see them branching this way. You just know. And that’s hard to convey. How could you just know? But I knew we were very likely cut from the same cloth– a very, very, very rare cloth.”

Jill believed that they both had familial partial lipodystrophy (FPL), a disease in which fat is improperly stored, leading to very distinct body types — and often sudden cardiac death in middle age. Many FPL patients never receive the diagnosis that saved Jill and Priscilla’s lives. WeHealth has launched a powerful new social media-driven tool to reach these patients and connect them with life-saving diagnoses and treatments.

Check out our campaign at http://wehealth.co/goals/9/

Curing Rare Disease: What We Have to Gain

30% of children with rare disease will not live to see their 5th birthday.

This reality reflects the inability of our medical system to diagnose and treat children with rare disease. While we have made significant progress, there is clearly a long way to go. In today’s world, where technology advances at a breakneck speed, it is unacceptable that we have been unable to find a way to keep these children alive.

To put this into perspective, I performed some back-of-the-napkin math. According to the CDC (link), 1 in 500 newborns died before their 1^st birthday due to a rare disease. In other words, 0.2% of all children who enter into the world never have a chance to live out their dreams. While 0.2% may seem small, if you apply it to the US population, 700,000 people could have been alive today if we had means to cure their rare disease. To see what we lost out on, I applied these numbers to several professions (numbers from Department of Labor Statistics).

Below, see what these children could have achieved, given the chance:

We need to change the thinking that these diseases are rare.  Imagine the impact if 1,700 police and firefighters suddenly disappeared.  If we suddenly lost 8,000 doctors and nurses or 85 professional actors and musicians.  God forbid a congressman disappears.  Can you imagine the outcry?

These children have so much to offer the world.  We just need to give them the chance.

Incentivizing Social Search

The world is smaller than it has ever been. This observation reflects how the Internet and social media have strengthened our ability to connect with people and maintain those connections regardless of our physical distance. We have used social media to revive dormant friendships, make friends on the other side of the world, and expand our networks far beyond what was once possible.

Social media has also enabled us to document our connections, resulting in a “virtual rolodex”. We now have the ability to find almost anybody in the world through the mutual friends and connections that we have on Facebook, Twitter, LinkedIn, and Instagram, among others.

Stanley Milgram’s “Six Degrees of Separation” law states that we are between 5 and 6 connections removed from anybody in the world. So if my friend is 1 degree removed, and my friends friend is 2 degrees removed, I am only 3-4 more degrees removed from connecting with anybody in the entire world. This works because our networks grow exponentially with distance. In other words, if I have 100 friends, and each of those friends has 100 friends, my “2nd degree” number of connections is 10,000. My “3^rd degree number of connections is 10,000 X 100 = 1,000,000. There will be overlapping of friends, but it doesn’t take long to get into a number in the billions, which covers the rest of the world.

To have some fun with this idea, play the “Six Degrees of Kevin Bacon” game (link), which can connect Kevin Bacon to any actor in the world where each degree of connection is defined by two actors acting in the same movie together. I bet you can’t find an actor more than 6 degrees removed from Kevin Bacon! The Lexington Herald Ledger created a cool graphic that connects Kentucky celebs to Mr. Bacon.

While this is a cool phenomenon, how can we put it to use? Manuel Cebrian is a leading expert on using our social networks to find people and solve problems. He found that we can get people to participate in social search to find extremely hard-to-find targets by providing the right incentives. And the solution, while not immediately obvious, is elegantly simple and powerful! Read his story about how these elegant incentives create a powerful search tool that works by crowdsourcing people’s social networks (link).

We are inspired by Manuel’s work and are applying the principles of his research to find rare disease patients and connect them with advocacy groups and research opportunities. Hope you enjoy the read!