Uplifting Medical Advances, Sham Medical Bills, & Abortion Bans Kill Women (We Can Help)
A free public service for a better community
A Good Day To Advocate for Better Healthcare
If there are subjects you’d like to see or improvements made, please let me know using the comment button below.
Videos of these newsletters appear on Youtube on this channel. Let me know what you think.
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
Thanks for reading Healthcare Advocacy! Subscribe for free to receive new posts
Hi Sue Thank you for your kind words about the videos and bringing this to my attention. We wrote about this about 2 years ago when some of the groups with whom we participate identified it as a serious issue, as you rightly do. Those groups included Physicians for a National Health Plan and the League of Women Voters Healthcare Special Interest Group (national).
I promise to bring myself back up to date on ACOs and write about them as well as have actions that we can all take to make sure our representatives know the score.
I really appreciate you also including links to make my job easier. Again, thank you.
Alan Unell: I have just recently started watching your YouTube channel and I am so impressed with the amount of hard work you put into the research of your topics. There is a topic that I would like you to investigate that no one else is talking about but is very serious and can do a lot of damage to Medicare health care beneficiaries. The subject is Accountable Care Organizations. This is a complex subject and there is a lot that goes into it that even I, who has tried to understand it for years, still do not know a tenth of it.
Back in 2010, President Obama started the Affordable Care Act. Part of the policy is to enroll all traditional Medicare beneficiaries into Accountable Care Organizations (ACO) by the year 2030. ACO will act like Advantage plans in that the beneficiary will be required to have a primary care provider which can be an MD, OD, PA or RNP, who will act as their guardian (gatekeeper). This gatekeeper, regardless of their education or experience, will be in charge of managing, coordinating and controlling their health care (like HMOs/Advantage plans). The gatekeeper, and their health plan organization, will be held responsible for total cost of care (capitated payment) in exchange for total care (HMO style). This gatekeeper will decide if, when, where and when you will see a specialist (unless the beneficiary knows their rights and insists on seeing the specialist of their choice). If allowed to see a specialist, the gatekeeper will "steer" the beneficiary to one of their own specialist or a specialist that they have partnered with in the community. This specialist has agreed to low-cost (often low quality) care inasmuch as they are partnered with an ACO who is responsible for the total cost of care. Traditional beneficiaries will have no idea that they are in highly controlled, managed value-based (HMO) care as they are not being told and if they are told, they are told in a way that they do no understand the ramifications of being in such a situation. The most that is required of an ACO to inform patients is to tack a notice in the waiting room, knowing that no one is going to read it. As well, Medicare beneficiaries will be undergoing step therapy, prior authorizations, delayed and denied care, just like in HMO's and Advantage plans (that is how capitated systems work).
Even worse, ex-president Trump allowed private equity investment firms to start ACOs (what could go wrong with that), again without the patient knowing about the dire consequences. This ACO model is called ACO-REACH. President Biden had the opportunity to stop the project but did not. ACO providers are required to jump through all kinds of CMS hoops, required blood tests, required medications, step therapy, required immunizations. The requirements are so strict, the providers have very little concern for patient safety or autotomy, as the provider's first and foremost responsibility is to satisfy CMS (not what the beneficiary wants). If the patient asserts their patient rights and it disagrees with what CMS wants (like denying statin therapy or a Covid for flu shot), they are labelled "noncompliant" in their electronic health record, as if they were nothing but a naughty little child. The more hoops the providers jump through correctly, the more money they or the health care system makes. Therefore, they are literally punished if they do not follow CMS's guidelines. I have even heard of doctors "firing" patients for not following their (actually CMS's) orders, as in not taking their statin or anti-hypertensive medication.
The last article I read recently was that CMS has been able to railroad 50% of traditional beneficiaries into a managed-care, value-based ACO. ACO's include Johns Hopkins, Mass General, Mayo Clinics, Stanford, UC California systems, Dignity Health, Sutter Health, Cleveland Clinic. Right now, most of these ACO's are hybrid models, partial fee-for-service and partial Medicare subsidized with bonuses, the more money saved, the higher the bonus payments.
Not only that, CMS has been experimenting on traditional beneficiaries with "bundled payments" as in, a capitated payment for bundled services such as a capitated payment for total cost of care for a heart attack, stroke, orthopedic procedures and even one's oncology care (Google CMS Innovation Oncology Model." How would you like it if you found out that you had life-threatening cancer and CMS paid an oncology clinic (who agreed to give cut-rate care) a flat fee to treat you. I think it is a five-year study before they determine if it is a "success" or not....and the patient is not being told that they are in such a capitated payment system. They are not going to be told that they could go to MD Anderson, Stanford, UCLA, Mayo, Cleveland, etc. because they know no one would agree to such a thing if they were given a choice.
So, Dr. Unell, if you have ever been in an highly controlled, high regulated, parsimonious, restrictive, dangerous HMO or Advantage plan, then you would understand the necessity of spreading the word to all Medicare beneficiaries as they have absolutely no idea they are in one. It angers me to no end how deceptive and devious CMS is about this set up. Not understanding that one is in a HMO style health care when one thinks they have free choice, could cost people their lives.
Link to the CMS Innovation Center (ACO) white paper
https://www.cms.gov/priorities/innovation/strategic-direction-whitepaper
Page 14:
"Advanced primary care and accountable care models are central to driving growth in the number of beneficiaries in accountable care relationships. The CMS Innovation Center has set the goal of having every Medicare FFS beneficiary in an accountable care relationship by 2030 and will set interim targets to measure progress towards that goal. This goal would not only aim to have all beneficiaries in value-based care arrangements, but for them to be in care arrangements where their needs are holistically assessed and their care is coordinated within a broader total cost of care system."
This is an old article from the "Independent Institute" but what he says is still relevant today.
https://www.independent.org/news/article.asp?id=3372
Thank you, Dr. Unell. This is so evil and so dangerous and no one knows about it. Would you please help get the word out (that is, if you disagree with ACOs, maybe you are in favor of them).
Sue Milbourne