A Good Day To Advocate for Better Healthcare
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Medicine and Climate Change :)
Green Hospitals
The University of California Irvine is building a new hospital and medical complex. It will be completely electric and about as eco-friendly as you can get. (link). It is on track to open in 2025.
Since hospitals and operating rooms typically run 24 hours a day, they consume massive amounts of energy and resources. Addressing this was imperative for UCI Health and University of California leadership.
It will house a seven-story, 350,000-square-foot, acute care hospital with 144 inpatient beds, 10 operating suites and a 24-hour emergency department with 20 treatment rooms.
Climate Friendly Medicines
Here is an example of taking a step to help the environment.
Patients in the United States are prescribed roughly 144 million of what doctors call metered-dose inhalers each year, according to the most recently available data published in 2020. The cumulative amount of gas released is the equivalent of driving half a million gas-powered cars for a year. So, the benefits of moving to dry powder inhalers from gas inhalers could add up.
In fact, each puff from that type of inhaler releases a hydrofluorocarbon gas that is 1,430 to 3,000 times as powerful as the most commonly known greenhouse gas, carbon dioxide.
A recent study of some patients in the United Kingdom who use dry powder inhalers found that they have better asthma control while reducing greenhouse gas emissions. In Sweden, where the vast majority of patients use dry powder inhalers, rates of severe asthma are lower than in the United States. These units are best for adults and older children with asthma, but they may not be suitable for everyone because they require deep, forceful breaths.
I looked around and found these are available in the US.
Diskus (Advair, Flovent, and Serevent)
Turbohaler or Turbuhaler (Symbicort)
If you use one, ask your doctor if dry powder delivery will work for you. They may not be less expensive yet.
Gene Therapy & Vision
On December 8, 2023, the U.S. Food and Drug Administration (FDA) approved Casgevy, the first CRISPR-based gene therapy for treating sickle cell disease in patients 12 years and older. CRISPR stands for clustered, regularly interspaced short palindromic repeats.
Now, a treatment that used CRISPR was found to be safe and efficacious in improving vision among a small sample (14) of patients with inherited blindness in the Phase 1/2 clinical trial. Inherited retinal degenerations are a leading cause of blindness around the world.
There was meaningful improvement in vision for most patients around three months later and it was not directly tied to any serious side effects, according to the trial results, published May 6, 2024 in the New England Journal of Medicine. The therapy remains experimental and the results need to be replicated in a larger group of people.
The trial, which started in 2019, enrolled 12 adults, ages 17 to 63, and two children, ages 9 and 14, with inherited retinal degeneration caused by mutations in the CEP290 gene. That gene provides instructions for making a protein involved in many types of cells, including light receptor cells in the eyes. Mutations in CEP290 are the most common cause of severe early-onset retinal degeneration, which causes vision loss in children.
Currently, there is no treatment approved by the US Food and Drug Administration for CEP290-associated inherited retinal degeneration. But this is a good start.
DRUG Shortages Revisited
Last week we reported on drug shortages in the US. There are about 300 critical medicines that are in short supply and the results can be tragic and fatal. HHS has actually prepared a report on shortages - released a few days before our request for one (oops). Here is the link. It has several policy recommendations to address the problem, since there are multiple causes for shortages.
Resilience to disruption is key. A resilient supply chain is one that prevents disruption where possible, is prepared for disruption risks, and recovers quickly from unexpected events that could lead to shortages. Strategies to create a robust and resilient pharmaceutical supply chain include diversification of supply—both in overall redundancy of manufacturing capacity and in the balance of domestic and diversified, foreign sourcing—and investment in reliable, efficient, and sustainable manufacturing practices. Mitigation and prevention tools, such as buffer inventory and capacity, are also essential supply strategies. Moreover, proactive monitoring, assessment, and communication of risks and vulnerabilities to prevent or mitigate shortages of medical products are crucial. These include implementing:
Manufacturer Resiliency Assessment Program (MRAP) to measure how well manufacturers can cope with supply chain disruptions.
Hospital Resilient Supply Program (HRSP) to establish demand incentives and/or penalties, facilitating hospital purchasing that prioritizes supply chain resilience, rather than the current structure which generally priortizes cost alone.
Supply chain management is never easy and requires insight into pretty much every phase of development so you know what drives shortages or delays in the process.
If you’re interested in supply chain I recommend Eliyahu Goldratt’s Theory of Constraints. When I was a Six Sigma teacher this was key.
In the vein of understanding shortages (at the highest level) Rep. Sara Jacobs introduced H.R.3008 - The Drug Shortage Prevention Act of 2023.
This bill requires drug manufacturers to notify the Food and Drug Administration (FDA) if there is an increased demand for certain critical essential medicines that may result in a shortage. So at least there would be some advanced warning of upcoming shortages. A start - but we have to start somewhere.
ACTION
This is a complicated issue and needs to be addressed. Let’s ask Congress to take a first step and support HR 3008. Let’s also ask our members of Congress and Senators to read the HHS report, “Policy Considerations to Prevent Drug Shortages and Mitigate Supply Chain Vulnerabilities in the United States” and evaluate what it would take to implement the recommendations. Their contact info is in the Resources section below.
Or use RESISTBOT to send the message below by texting SIGN PCDNCF to 50409. Learn about RESISTBOT in the Resources below.
“I am your constituent and I want you to know that drug shortages are a problem in the US. Shortages cause people to not take their full doses and have lead to death. The supply chain issues are complex. but we need vision into the supply chain to understand where shortages may occur and wha to do a bout them. HR 3008 begins to collect some manufacturer data so we can have a heads up on potential shortages. Please support that.
HHS has just issued a report on the subject called “Policy Considerations to Prevent Drug Shortages and Mitigate Supply Chain Vulnerabilities in the United States”. It identifies better monitoring and reporting on manufacturer resilience with respect to potential supply chain disruption. It also recommends hospitals consider supply chain resilience as a part of their purchasing strategies. Please ask the CBO what it would take to implement those recommendations and what the impacts would be. Then we can determine if and when to implement them. Thank you.”
Resources
Healthcare Advocacy (Us)
Website
Our Newsletter resources including reproductive healthcare
Healthcare Advocacy Reading List
Find My Elected Officials
Contact the White House https://www.whitehouse.gov/contact/
Contact State and Federal Representatives
By phone: (202) 224-3121
By email: democracy.io
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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