Highlighting Health Disparities | #AdvocateForLupus
Highlighting Health Disparities
#AdvocateForLupus
May 23rd - 3 PM EST
The #LupusChat Influencers
Welcome to the #LupusChat recap! 32 participants joined us and made their voices heard, generating 756 tweets and 5.131 million impressions.
In this Lupus Awareness Month conversation, we analyzed health disparities and barriers to access to care with rheumatologist Dr Ashira Blazer (@ashira_md). We discussed the express need to dismantle these systems that impact the lives of people with chronic illness.
We went over some #LupusChat guidelines to help our conversation flow smoothly, then got our #LupusChat party started by sharing our name, where we are from, a little bit about ourselves, and if we were an animal, which we would be. Here is a recap of our conversation and here are just a few of the wonderful people who joined us at #LupusChat.
Happy Sunday! Raquel from Texas joining a lil late. If I were an animal I would be a lioness or a honey badger. #LupusChat https://t.co/8wxLExsctz
— RaquelRoschell (@raquelonpurpose) May 23, 2021
I’m Kate from Portland. Dx w lupus in 2018. I might be a fox. #LupusChat pic.twitter.com/6oHabh0Mog
— Kate Sattler | Sweet Freeze (@katesattler) May 23, 2021
Hi #LupusChat! I'm Sofia from Portugal and I'm sure I would be a dog. Very loyal to my family and who cares for me. Also, I would totally live just for them if they needed! https://t.co/M6g88YUlcT
— Sofia (@abssofia) May 23, 2021
Hi #LupusChat ! I'm late to the discussion today, but very excited to hear from Dr. Blazer! 💜 My name is Jillian, I'm a lupus researcher in Worcester, MA. If I were an animal I'd be a cat 😺
— UMass Lupus (@UMassLupus) May 23, 2021
Ivey Janette,Albuquerque. DX with lupus anz lupus nephritis in 1995. I'd be a cuddly poodle. #LupusChat pic.twitter.com/O6dMed4RmQ
— Ivey McClelland(she/her)🌈🌈🌈 (@iveyjanette_207) May 23, 2021
Hi... I'm Elizabeth from NJ and a #Lupuschat co-host.
— Caring For Lupus (@CaringForLupus) May 23, 2021
My connection to lupus is through my daughter Miah.
Ramon says that he would be a lion lol... Because he is the king of the jungle https://t.co/pG7PcsjLM7 pic.twitter.com/9toY0GfkKD
Then we began with question 1.
Q1: What are some examples of health disparities and socioeconomic barriers to healthcare? What is health equity?
Under insurance and being uninsured! Generally tying healthcare coverage to employment. Black and brown communities are less likely to have employer-issued insurance, and more effected by joblessness. Especially due to the prison industrial complex. #lupuschat
— Ashira Blazer MD (@ashira_md) May 23, 2021
A1: Being a transgender person. #LupusChat
— RaquelRoschell (@raquelonpurpose) May 23, 2021
A1: Major examples include lack of financial resources,
— Carly by Nature (@SynceNerd_Carli) May 23, 2021
Limited access to care, increased chance of environmental risks, limited community funding, food and housing insecurity, and so much more. #LupusChat
A1: These things heavily impact healthcare outcomes. Once we add in race, disability status, gender identity, sexual orientation, etc. the barriers and bias grow. #LupusChat
— Carly by Nature (@SynceNerd_Carli) May 23, 2021
A1: If a person is disabled, unemployed, or has a low paying job that affects their ability to acquire adequate health insurance. Where a person lives often determines whether they have access to healthy food and what medical coverage is available to them. #LupusChat
— Tiffany (@TiffanyAndLupus) May 23, 2021
A1. Some other barriers to healthcare are more indirect. For example, being unable to find or afford nutritious food, or having a very physically/mentally taxing job or one that makes it difficult to find time to go to the doctor. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) May 23, 2021
Once we were done sharing examples of health inequities and disparities, we delved deeper for Question 2 and discussed the impact this can have on patients.
Q2: In what ways has lack of access to preventative care and/or bias in healthcare impacted outcomes for patients?
A2: it’s just frustrating, one time I was in extreme pain on my side and throwing up and the doctors told me its nothing else they can do for me and DISCHARGED ME.. I went some where else and was told I made it just in time, my kidneys were failing 😞😞#LupusChat
— ShiffonTheStar ⭐️ (@ThatNewJointx3) May 23, 2021
A2. If there’s one thing I learned from #ACR20 it’s that past damage is indicative of future damage. The little flares and little amount of organ damage add up. So preventive care can literally be the difference between life and death. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) May 23, 2021
A2. Not getting quality healthcare and/or providers due to racism,sexism and where we live. Providers ignoring our symptoms until it's too late and we end up in an overcrowded ER. Apathy and institutional racism by doctors. #LupusChat
— Ivey McClelland(she/her)🌈🌈🌈 (@iveyjanette_207) May 23, 2021
A2: When I was 1st diagnosed with lupus at 24 my symptoms were so severe I couldn’t even walk on my own. Had my physician taken some of the symptoms I experienced as a teen seriously perhaps I wouldn’t have kidney disease. #LupusChat
— Tiffany (@TiffanyAndLupus) May 23, 2021
A2 : We receive "adequate" or below adequate healthcare. We get the bare minimum. Our issues, pain and questions are not taken seriously. Our health suffers and we decline. We get tired,apathetic and stop going to the doctor. #LupusChat
— RaquelRoschell (@raquelonpurpose) May 23, 2021
A2. Primary and preventative care is first line. Minority patients are less likely to be believed when reporting lupus symptoms resulting in delays in diagnosis and risk for worse outcomes
— Ashira Blazer MD (@ashira_md) May 23, 2021
It’s going to take work from all angles to dismantle the systems causing these inequities. We discussed societal changes that could lessen the burden.
Q3: In your opinion, what are some changes in society and medicine that could lessen health disparities and contribute to health equity?
A3: Our famous saying “ stop treating us a certain way because we don’t look sick #LupusChat
— ShiffonTheStar ⭐️ (@ThatNewJointx3) May 23, 2021
A3: Introducing legislation that would remove the income cap limits for people who are disabled while still ensuring they keep their healthcare. Too many disabled folks live far below the poverty line. #LupusChat
— Tiffany (@TiffanyAndLupus) May 23, 2021
A3. We need a lot of changes in access to treatments. Costs are out of control and regulated. Also the fact that current policies let insurance have the final say on our treatments rather than Dr and pt. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) May 23, 2021
Q3. Actually listening and hearing patients concerns.
— RyaneCandyce the Mistress of Books (@ryanecandyce) May 23, 2021
I started showing symptoms at 15 and while my mum listened, my doctor did not. His solution was sunscreen and stay inside. #LupusChat https://t.co/95IQbOw03B
A3. Educating ourselves about medicine and symptoms. Promoting diversity in healthcare. Especially in Black and Latino/a communities. That would help eliminate mistrust of doctors and hospitals. Having doctors LISTEN to us when we come for our appointments. #LupusChat
— Ivey McClelland(she/her)🌈🌈🌈 (@iveyjanette_207) May 23, 2021
A3. Improving shared decision making between doctors and patients, and supporting patient peer groups. Support is everything #lupuschat
— Ashira Blazer MD (@ashira_md) May 23, 2021
The problem of inequity persists from bench to bedside. For Question 4 we examined the ways research is impacted by the lack of inclusion and diversity in healthcare
Q4: How do disparities and the lack of diversity of patients and scientists in research influence the treatments available for us?
A4: When participants in research don’t reflect different racial/ethnic groups, genders, age, etc it makes it extremely difficult to understand how both disease and drug efficacy impacts them. #LupusChat
— Tiffany (@TiffanyAndLupus) May 23, 2021
A4. It means communities of color aren't getting access to treatments,clinical trials and other research. Our voices aren't being heard. And as a result,our life expectancy is lower. #LupusChat
— Ivey McClelland(she/her)🌈🌈🌈 (@iveyjanette_207) May 23, 2021
A4. When most researchers come from majority groups, questions of disparities can be biased against those whose problems we seek to solve. Bias in medical research produces biased guidelines and health information #lupuschat
— Ashira Blazer MD (@ashira_md) May 23, 2021
A4: Because these groups are so vastly underrepresented it is difficult to make medical advancements and effective therapies which prevents some of these populations from receiving new treatments from innovative research. #LupusChat
— Tiffany (@TiffanyAndLupus) May 23, 2021
A4. It is also encouraging to Black patients and patients of color when the people doing the research look like us. There is still a lot of (well-deserved) mistrust of the medical community. Things like this help. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) May 23, 2021
Implicit bias and negative perceptions have far reaching impact. For Question 5, we explored how these things heavily influence the way we manage our care.
Q5: What role does complementary/natural medicine have in your overall health care? How does bias in healthcare impact your use of these care methods?
Diagnosing lupus and identifying solutions takes empathy. Bias means not giving the patient the benefit of the doubt. A “non-compliant” patient is more often one struggling with social challenges. Stigmatizing labels further penalize #lupuschat
— Ashira Blazer MD (@ashira_md) May 23, 2021
A5. Bias influences physician decision making—from offering research study entry to life saving biologics to kidney transplants. Negative bias limits care. #lupuschat
— Ashira Blazer MD (@ashira_md) May 23, 2021
A5: My sister is a nutricionist and she helps me complementing my treatment with an adjusted healthy diet #LupusChat https://t.co/T5kJNX2rsT
— Sofia (@abssofia) May 23, 2021
A5 I take several prescribed vitamins and an over the counter one,suggested by rheum. Last appt a HE brought up probiotics. Many complimentary treatments are not covered by insurance and I can't pay out of pocket on SSI. #lupuschat
— staff of one (@hand_to_eye) May 23, 2021
I take vitamins also. My rheumatologist put me on folic acid to lessen the side effects of methotrexate. I started a plant-based diet earlier this year after two trips to the ER for heart and lupus issues. #LupusChat
— Ivey McClelland(she/her)🌈🌈🌈 (@iveyjanette_207) May 23, 2021
A5. Complementary/natural medicine isn't really done in Black communities. It's either trust/mistrust apathetic doctors and whatever overcrowded ER is available. Or self-medicate with aspirin,illegal drugs or booze. Or relying on pastors to "heal" you through prayer. #LupusChat
— Ivey McClelland(she/her)🌈🌈🌈 (@iveyjanette_207) May 23, 2021
Finally came our last question of the day!
Q6: Using the hashtag #AdvocateForLupus, voice your thoughts on health disparities and access to care issues that you would like to see changed today or in the near future
A6: I want underrepresented voices to be more than a box checked. I want to see people and organizations who actually care at the forefront. Maybe an enclave where we could express ourselves, our healthcare team represents,cares & fights for us. #LupusChat
— RaquelRoschell (@raquelonpurpose) May 23, 2021
A6. Those with disabilities should not have to remain at poverty to receive benefits! Let’s change these restrictions #advocateforlupus #lupuschat
— Ashira Blazer MD (@ashira_md) May 23, 2021
A6. I #AdocateForLupus because I want people with Lupus to have a chance at living their best lives. We should not have to receive lesser quality care because of factors out of our control. #LupusChat pic.twitter.com/U8m6OekmWE
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) May 23, 2021
A6. I'd like to see universal healthcare. Where getting quality care doesn't discriminate against income,color,gender,ethnicity and where you live. Where we all have access to specialists and medication. With equal access to food and services. #AdvocateForLupus #LupusChat
— Ivey McClelland(she/her)🌈🌈🌈 (@iveyjanette_207) May 23, 2021
A6: As I #AdvocateForLupus, I would like to see more outreach, education, and awareness for lupus in underserved communities. I want it available in multiple languages, community centers having educational gatherings as a preventative healthcare initiative. #LupusChat pic.twitter.com/VLpaAjRSvp
— Tiffany (@TiffanyAndLupus) May 23, 2021
Thank you for reviewing our recap. And special thanks to Dr Blazer for us and sharing her insights with the LupusChat community! We appreciate all she does in advocacy and research for our community.
You can still participate in this Twitter conversation by clicking on the LupusChat icebreaker prompt and questions above and replying. Make sure to use the format "A1. This is my answer. #LupusChat" and add the hashtag to your responses.
Enjoy the rest of your day & remember to practice a little (or a lot) of self-care today.
It is absolutely okay to take time for self care.
You can’t do things well if you don’t feel well.