4 ways you can help improve global health

I spent part of this weekend participating in the RESULTS International Conference.

The conference was originally planned for Washington, D.C., but as with so many other plans, the pandemic forced a change of venue. I’m not sure I would have been able to go if travel had been involved, so I saw this as an opportunity to participate I wouldn’t have had otherwise.

Today, Dr. Tedros Adhanom Ghebreyesus, Director-General of the World Health Organization, spoke to us about how we can all have a role in shaping the future, especially when it comes to global health. Many of his comments (especially “COVID politics should be quarantined”) pertained to the pandemic, but they also apply to global health more broadly.

4 ways you can help improve global health

Here’s the 4-step action plan he recommends:

Continue advocating for more investment

There are a variety of types of investment that can make a difference for global health. Examples include the World Health Organization itself. President Trump has said he intends to withdraw US funding from the WHO, although it remains to be seen exactly how that will play out. Other organizations that make a difference include The Global Fund to Fight AIDS, Tuberculosis and Malaria and Gavi, the Vaccine Alliance.

Fight misinformation

Misinformation is confusing at a minimum and could cost people their lives at the worst extreme. Learn more from this Columbia Journalism Review article, which outlines why misinformation is so dangerous. Learn more about taking an active role in combating misinformation here (I am signed up and looking forward to the next steps).

Support accelerated innovation

The WHO has a research and development blueprint that has been activated to try to speed a reliable remedy for helping people recover from (and keep from being infected with) COVID-19. Learn more here.

Advocate for national unity and global solidarity

The 800+ RESULTS advocates were not all in the same room for Dr. Ghebreyesus’ speech, but in my head (and heart), I feel like every one of us stood up and cheered when he said this, perhaps not literally, but the sentiment was there.

Dr. Ghebreyesus went on to say, referring back to the potential of the US withdrawing funding from WHO, “It’s not the money. It’s the relationship with the US that matters, as it can lead to more money. When the US is generous, it gives hope to others. When others are safe, the US is safe.

4 ways you can help improve global health
My screen capture skills need a little work, but I wanted to catch a memory of this moment.

I appreciate the opportunity to hear Dr. Ghebreyesus speak. The last thing he said was that number four (about the solidarity) should be number one.

I agree, and I’m ready to do my part! If you want to learn more about RESULTS, please visit this link.

I’m linking up with the Kat Bouska prompt to write about “Something someone said recently that made you think.”

4 ways you can help improve global health

Guest Post: Being Your Own Medical Advocate

I am thrilled to welcome my friend Hannah Vaughn Setzer as a guest blogger today. We haven’t known each other long, but almost as soon as we met, we knew we had many things in common: love of social media, interest in fitness, and a desire to help people understand challenges people face in navigating the world of health care. Thank you, Hannah, I hope you’ll share more with us in the future.

Being Your Own Medical Advocate

This is a tough one. I’m not a parent. I believe with my whole heart that my parents and doctors made the best decisions they could at the time with the information they knew when I was growing up. Were some of those decisions not successful? Yes. Did some inflict more pain and hardship upon me? Yes. Am I resentful or angered by that? No.

I imagine it is the hardest thing on earth to see your child, or parent if you’re an adult caregiver, in pain and suffering and have to make decisions that medical professionals are presenting you. I’m in the in-between stage. I’m a fully functioning adult who gets to be my own medical advocate (while still calling my mama to help me remember facts or process things) for the first real time in my life. This is liberating and also can be scary. 

Several years ago I took my health into my own hands in the biggest way I probably ever will. Up until age 23 I was on canned, genetically made, pre-packaged formula for people with feeding tubes or other medical needs. Doctors advised my parents to put me on this from a very young age and admittedly it kept me alive. I was able to function and go to public school and participate in activities and camps and be social. It also made me incredibly sick often. We didn’t know it was the cause but it was certainly a catalyst for many infections and illnesses I had for my first 23 years. 

With the encouragement of some friends, when I was 23 I went off the formula. I started blending my own foods and trying to eat healthier real foods. It was a steep learning curve. My parents were not happy. I lost a lot of weight at a very rapid pace until we figured out a blended diet that worked for me to sustain my body. Five years later I am healthier than I’ve ever been, I eat real food, and instead of getting sick monthly I’ve been sick four times in those five years. 

While I don’t get sick often anymore, it is still very difficult when I do get sick. Medical students don’t study people like me in medical school. Your run-of-the-mill family doctor doesn’t know what to do with me when I am sick. I have to be my own advocate and tell them what is wrong, and tell them the treatment solution. I know my body well enough after 28 years to know what works and doesn’t work. I know exactly how it feels when I get an infection. I know what antibiotics are successful and which aren’t. I’m no longer a child. It’s no longer a guessing game. The scary part is over. My parents and doctors did all the hard work of diagnosing and figuring out what works best and now that I’m the advocate I just have to relay the message. 

Being a self-advocate doesn’t only apply to medical situations. I have to advocate for myself in new work environments. All throughout school my parents and I had to advocate for me. This world wasn’t built for people with disabilities or medical conditions, therefore the advocating never stops. I’m a Disability Rights Advocate and I teach people every day how to advocate for themselves. This ranges from parking lot access, asserting their rights to an interpreter, getting a driver’s license, and accessing their own middle school building.

It can be exhausting to have to fight every day for basic access and rights that the rest of the world is afforded, but the alternative is a life that may be sorely lacking in basic human necessities. Every time we advocate and educate new people and providers we aren’t just helping ourselves we are helping everyone, those behind and ahead of us to change the world. It can seem overwhelming and exhausting and pointless, but I’m here to promise you that it is not.

Keep fighting the good fight! 

Being Your Own Medical Advocate

A Note from Paula

I love the fact that the picture Hannah sent includes a print that says, “We can do hard things.” I first learned about Hannah and Feeding Tube Fitness when she went to visit my November 28 birthday-mate Lydia in the hospital. Lydia currently has a feeding tube (learn more about her/share support at her Facebook page or her GoFundMe), and Hannah wrote this in the Instagram caption:

I want her to grow up in a world where she sees and knows people like her who are pursuing all their dreams, kicking butt and taking names. I want her to know that she can do anything she wants in life, I want her to see athletes, models, and girls like her running the dang world.

Hannah and I ended up at the topic of medical advocacy for a variety of reasons. She has had her own road to take regarding learning to advocate for herself. Lydia’s parents have had a crash course in communicating Lydia’s needs to her medical professionals. I struggled to figure out what would help my mom (when quite a few things seemed to be geared toward the hospital’s expediency) during her final illness and to be assertive enough to make sure my father-in-law’s well-being was taken care of during his final years, not to mention my own adventures in electrophysiology.

If there’s one thing I know, it’s that medical advocacy (for ourselves and for those we love) is a “hard thing.” Thank you, Hannah, for sharing your story. It gives us all emotional ammunition for that “good fight.”

Find Hannah on Instagram at Feeding Tube Fitness and on Facebook, also at Feeding Tube Fitness!