Uplifting Medical Advances, Sham Medical Bills, & Abortion Bans Kill Women (We Can Help)
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A Good Day To Advocate for Better Healthcare
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Cancer Drug Repurposed
A drug approved for treating the blood cancer multiple myeloma may offer a safe and effective way to reduce the risk of severe nosebleeds from a rare but devastating bleeding disorder.
Hereditary hemorrhagic telangiectasia (HHT), the world's second-most-common inherited bleeding disorder, affects approximately 1-in-5,000 people and can have life-threatening complications, but there are currently no U.S. FDA-approved drugs to treat HHT.
The PATH-HHT study, the first-ever randomized, placebo-controlled U.S. clinical trial, evaluated the oral drug pomalidomide, currently approved to treat multiple myeloma, to treat bleeding and disease manifestations in HHT. The trial, which enrolled more than 50 patients at Massachusetts General Hospital (MGH), found that the drug resulted in a significant, clinically relevant reduction in the severity of nosebleeds and improved quality of life. Results of PATH-HHT are published in the New England Journal of Medicine. The study was halted early due to their outstanding success. (Mass General)
Leukemia News
According to researchers at The University of Texas MD Anderson Cancer Center, 80% of patients with previously untreated or relapsed/refractory advanced-phase chronic myeloid leukemia (CML) – including both accelerated or myeloid blast phases of the disease – or Philadelphia chromosome-positive acute myeloid leukemia (AML) achieved a bone marrow remission when treated with a novel combination of decitabine, venetoclax and ponatinib.
Findings from the Phase II clinical trial, published today in The Lancet Haematology, represent an important step forward for patients with advanced-phase CML, who tend to have poor outcomes. Limited data on a standard-of-care approach to treating the disease, highlights the need for investigations into additional therapeutics.
A total of 20 patients were enrolled in the trial, with 14 having myeloid blast-phase CML, four with accelerated-phase CML, and two with Philadelphia chromosome-positive AML. Overall, 50% of patients achieved a complete remission or complete remission with an incomplete hematological recovery, and an additional 30% of patients achieved a morphologic leukemia-free state. Responses were seen even in patients who had received multiple prior therapies and in those with high-risk cytogenetic or molecular features. (U of Texas)
Legislative Three-Card Monte
Three-card Monte is mis-direction card trick used to take money from the unsuspecting. Here is a Wikipedia reference.
I want to point out two bills being marked up in Congress that have that same mis-direction flavor that are healthcare related. The are:
H.R. 3227, Ensuring Seniors’ Access to Quality Care Act (Reps. Estes and Connolly)
H.R. 3227 would allow nursing homes cited for egregious violations, such as medical record falsification or failing to report resident abuse, to continue to operate their own nurse aid training programs.
H.R. 9067, Building America’s Health Care Workforce Act (Rep. Guthrie).
H. R. 9067 establishes a waiver of certain training and certification requirements for specified skilled nursing facilities and nursing facilities. It allows any hours worked by trainees to count towards certification - whether they really are applicable or not.
Extra Credit Action
Use RESISTBOT via [Apple Messages / WHATSAPP / MESSENGER] or by texting SIGN PUELIC to 50409 on your cell phone to send this message your Member of Congress telling them that these two bills HR 3227 and HR 9067 just put patients at risk.
“I am your constituent and I want to make sure you know that there are two bills in Congress that purport to help patients but will do just the opposite. They are H.R. 3227, Ensuring Seniors’ Access to Quality Care Act and H.R. 9067, Building America’s Health Care Workforce Act .
The first allows substandard dangerous facilities continue to train and certify staff even when they have been found to put patients in danger. The second allows required certification training hours to include unrelated time at work. This does not make sure that nurses aides and others actually have the skills needed they need to take care of patients. The lives of those patients depend on staff being knowledgeable and capable as demonstrated by certification. Cheating the certification process just puts patients at risk.
I want you to vote NO on HR 3227 and HR 9067 and demonstrate that you put patients first. Thank you.”
Abortion Ban Deaths
Georgia's maternal mortality committee concluded that the deaths of two women who didn't receive adequate care for complications of medication abortion were preventable, according to ProPublica investigations.
Amber Thurman, 28, and Candi Miller, 41, both died in 2022, not long after the state's abortion ban went into effect.
The committee found that Thurman did not receive necessary medical care after she didn't expel all of the fetal tissue from her body during a medication abortion. Staff at Piedmont Henry Hospital in Stockbridge, Georgia, treated Thurman's sepsis, but waited to perform a dilation and curettage (D&C) for nearly 20 hours. By then, Thurman's condition had declined so severely that her surgeons determined they needed to remove her bowel and conduct a hysterectomy instead. She died during the operation, ProPublica reported.
Miller took her abortion into her own hands because of the ban, buying abortion pills online. She, too, did not expel all fetal tissue and thus would need a D&C -- but she didn't seek medical treatment out of concern about the ban, her family told ProPublica.
Hospitals do not have clear direction on when the patient’s life is enough danger to act. The lawyers working for the hospital cannot provide guidance to doctors since the law makes this a criminal matter. There is no science behind when to act anymore it is just a collection of vague language in law with a 10 year incarceration penalty for medical professionals.
PS if you think having a ban on abortion with exceptions for rape or incest is ok, keep in mind you’ll need a police report and may have to get permission in court. Good luck if you’re a minor or are already bleeding.
ACTION
Let’s let our elected reps know that it is time to pass the Women’s Health Protection Act, and start saving women’s lives.
You can contact your Member of Congress and Senators, https://www.usa.gov/elected-officials.
Or use RESISTBOT via [Apple Messages / WHATSAPP / MESSENGER] or by texting SIGN PEXCAV to 50409 on your cell phone to send this message.
“I am your constituent and I want you to know Amber Thurman, 28, and Candi Miller, 41, both died in 2022, not long after the Georgia abortion ban went into effect. They needed a D&C to save their lives and doctors told them to pound sand because they were afraid to go to jail. A D&C is a medical procedure to clean up after a miscarriage. Similar to an abortion but not the same.
OK now you have the names of dead women that the abortion bans killed. When will you say it is enough. I want you to get in front of microphones and denounce the laws that caused their deaths and then I want you to do everything in your power to get the Women’s Health Protection Act to a vote and restore a woman’s bodily autonomy. I will remember your actions and your words when elections roll around. I promise.”
I want you to take a public stand NOW for the Women’s Health Protection Act to restore a woman’s bodily autonomy. Again, If I don’t see something or hear anything from you, then I will vote accordingly.”
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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