Lupus Update
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Lupus Update
The cause of lupus has long escaped doctors trying to treat the autoimmune disease.
However, a study published this week identified a cause of lupus based on molecular defects in patients' blood. Lupus overproduces specific cells that attack the body’s organs and tissues. The incurable disease affects hundreds of thousands of people in the U.S.
People with lupus typically experience extreme fatigue, pain or swelling of muscles and joints, skin rashes such as butterfly-shaped rash on their cheeks or nose, fever and hair loss. It causes problems across the body, including kidney failure, seizures and memory problems. It attacks the brain and central nervous system and causes heart problems. It is estimated that the number of people with the disease in the US could be as high as 1.5 million by the Lupus Foundation of America.
Researchers are trying to strike a balance with the cells to help regulate lupus. Treatment currently relies on immunosuppressants to reduce inflammation and pain, however, the drugs often don't effectively treat the disease and their side effects hinder the body’s ability to stave off infections, researchers said.
“Up until this point, all therapy for lupus is a blunt instrument. It’s broad immunosuppression,” said study co-author Dr. Jaehyuk Choi, an associate professor of dermatology and a Northwestern Medicine dermatologist, in a statement. “By identifying a cause for this disease, we have found a potential cure that will not have the side effects of current therapies.”
Choi’s colleagues at Northwestern and researchers at Brigham and Women’s Hospital in Boston took part in the study published in the journal Nature. They compared blood samples of 19 patients with systemic lupus erythematosus, the most common form of lupus, and 19 patients without the autoimmune disease.
Researchers identified a new cause for lupus. The patients in the study had a chemical imbalance that controlled how their T cells, a type of white blood cell that's part of the immune system, reacted to infection.
The researchers found that lupus patients had too much of a protein called interferon, which helps fight infection, and not enough aryl hydrocarbon receptor (AHR) proteins, which regulate the body’s response to infection. This resulted in an overabundance of disease-promoting cells attacking the body. Replacing deficient AHR molecules with active ones could heal wounds instead of further injuring them, researchers say.
The researchers put AHR-activating molecules into lupus patients’ blood samples, which appeared to reprogram lupus-causing cells that could promote healing, a news release said.
The study offers the potential for new therapeutic strategies in lupus treatment. The goal is to target the disease-causing cells to better protect patients from the disease. (Northwestern University)
Cystic Fibrosis News
Cystic fibrosis is one of the most common genetic disorders, causing thick mucus build-up in the lungs and other parts of the body, breathing problems, and infection. Now, researchers have developed a gene-editing approach that efficiently corrects the most common mutation that causes cystic fibrosis, found in 85 percent of patients. With further development, it could pave the way for treatments that are administered only once and have fewer side effects.
A three-drug cocktail known as Trikafta has greatly improved patient quality of life since its development in 2019, but can cause cataracts and liver damage and must be taken daily at a cost of about $300,000 per year.
The new method precisely and durably corrects the mutation in human lung cells, restoring cell function to levels similar to that of Trikafta. The approach is based on a technique called prime editing, which can make insertions, deletions, and substitutions up to hundreds of base pairs long in the genome with few unwanted byproducts. The work was done by the Broad Institute and Harvard.(Broad Institute)
Emergency Department Deaths
When you go to or are taken to the emergency department at a hospital, you sort of expect that, since it is an emergency, you will be attended to swiftly. Not so.
We have written about the process of “Boarding”, where staff puts you somewhere and tells you they will get to you. Issues have been reported of low income, patients shunted aside in favor of others with easy to process insurance (Santa Clara University). I have one friend who went with chest pains and waited almost 12 hours before they thought they could check in on him. Another friend went and waited as long and was busy having a heart attack while sitting and waiting. After 12 hours he was dismissed. BTW, staff in the ED never told him he had a heart attack) - found out the next day from his regular doctor.
Last week in Vallejo, California it got as bad as it can. A man suffering from chest pains died in the Kaiser Vallejo emergency waiting room earlier this month after a lengthy wait without treatment in an incident that has raised concerns about the hospital’s ability to properly treat patients amid a staffing shortage in its emergency room.
Fifty-three-year-old Francisco Delgadillo Machuca, who went by his nickname Pancho, drove straight to Kaiser Vallejo from his job in San Rafael after his chest pains started on the afternoon of Dec. 8. He waited in the emergency room for eight hours without treatment until he collapsed at around 11:30 p.m. His family was notified he died at around midnight.
As his chest pains worsened his son called 911 and paramedics arrived at Laiser. The paramedics spoke to the staff there about him. He was taken back and examined, returned to the waiting room and then died.
Delgadillo Machuca’s death happened just three days after Kaiser Vallejo emergency room nurses circulated a petition demanding that the hospital increase staffing to ensure safe patient care.
Raquel Benito, the California Nurses Association union representative for Kaiser Vallejo’s emergency room nurses, told the Vallejo Sun that low staffing frequently means there is no triage nurse available to monitor patients in the waiting room, and that 10-hour wait times are common. (Vallejo Sun)
Ok Here we are again - under staffing means patients suffer and die. These places have licenses to operate, many are tax exempt, meaning we the people give them a huge cash break, and they cut staff to save money allowing people in the waiting room to die. Safe staffing is the answer or lose your tax exempt status, IMHO. Let’s remind Congress and our state elected officials that here is place where their action can actually save lives. PS the safe nursing staffing bills are S. 1113/H.R. 2530. Of course, HR 3421, Medicare for All has it as well.
ACTIONS
You can find elected representatives’ contact information here, https://www.usa.gov/elected-officials.
Action 1 Federal
Use RESISTBOT via [Apple Messages / WHATSAPP / MESSENGER] or by texting SIGN PDCTEZ to 50409 on your cell phone to send this message to your senators and member of Congress.
“I am your constituent and I am fed up with reading about patients dying in the Emergency Department because the facility is understaffed to save money. The latest one was reported in Vallejo, California last week at a Kaiser Permanente facility. Here is a link to the news story. https://www.vallejosun.com/man-died-in-kaiser-vallejo-waiting-room-eight-hours-after-seeking-treatment-for-chest-pain/
There are two things you can do - 1) pass safe staffing levels for care in hospitals. That is HR 2350/S. 1113). You have a hammer to enforce the rules too. No federal payments until they comply with safe staffing and if they are a non-profit - they lose their tax exempt status. If there are rules, there must be consequences. I expect you to move forward on this. After all, you can save lives instead of letting people die of neglect in the waiting room.”
Action 2 State Level
Use RESISTBOT via [Apple Messages / WHATSAPP / MESSENGER] or by texting SIGN PIFFAC to 50409 on your cell phone to send this message to your governor and elected state representatives.
“I am your constituent and I am fed up with reading about patients dying in the Emergency Department because the facility is understaffed to save money. The latest one was reported in Vallejo, California last week at a Kaiser Permanente facility. Here is a link to the news story. https://www.vallejosun.com/man-died-in-kaiser-vallejo-waiting-room-eight-hours-after-seeking-treatment-for-chest-pain/
There are two things you can do - 1) pass safe staffing levels for care in hospitals. You can see examples in federal bills, HR 2350/S. 1113. You have a hammer to enforce the rules too. No state payments until they comply with safe staffing and if they are a non-profit they lose their tax exempt status. If there are rules, there must be consequences. I expect you to move forward on this. After all, you can save lives instead of letting people die of neglect in the waiting room.”
Resources
Find My Elected Officials
Contact State and Federal Representatives - phone and email
Healthcare Advocacy (Us) Website
Our Newsletter resources including reproductive healthcare - Healthcare Advocacy Reading List
Important Healthcare Resources
League of Women Voters Healthcare Reform Toolkit
Organizations to Contact
National Nurses United Medicare4All
Physicians for a National Health Program
One Payer States
Healthcare Now
Reproductive Health
NARAL - Pro Choice America
Charley. chatbot abortion resource - make sure to use a secure incognito browser if you live in a state that has banned abortion
Planned Parenthood
Miscarriage and Abortion Hotline has references about where to procure abortion medications. They also assist women in the process of self managed abortion or miscarriage by phone or text and will respond in an hour. Details and hours of operation at their website.
United State of Women Reproductive health page (bottom of the page) has important resources such as medical support, access to Telehealth, prescriptions by mail, and legal support references.
Practice careful communications - The Digital Defense Fund has a number of tips to keep texts, calls, and internet use private. Here is their site.
If you need financial help with an abortion try abortionfunds.org
Claims Denials and Appeals & What to Do
Appeal a Healthcare Decision
Appeal/Negotiate a Hospital Bill
Disinformation Management
Cybersecurity Infrastructure Security Agency
Save Democracy
Chop Wood, Carry Water by Jessica Cravens
RESISTBOT
Link to the RESISTBOT site to learn more
Link to Chop Wood, Carry Water RESISTBOT write up
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Alan, how can we edit the ResistBot message so it doesn’t look like a duplicate of the one you offer? Messages about the same issue in different might help us assert more influence.