Last year, a Michigan Senator proposed a massive Sickle Cell/Thallassemia project, to include genetic testing for every Michigan resident on Medicaid.
It seemed a little odd: why go after so many people who aren't having symptoms?
Are policy-makers just gathering data because it's there? Maybe to bring Michigan Medicine more patients?? At the time, super-pricey drugs were ready to market for Thallassemia, so was Big Pharma pushing the bill?
But then, Morning Brew's healthcare edition popped up last month with this report of New York City hearing a similar bill. Hmm... Something is definitely going on.
More below the story.
NYC considers bill to improve sickle cell disease awareness and education
By Kristine White | September 19, 2023 | 4 min read
The New York City Council is considering legislation that proponents say will help more New York residents understand their risk for sickle cell disease, an inherited blood disorder that has been historically overlooked.
The City Council is expected to vote Wednesday on the bill, which aims to educate healthcare professionals on sickle cell disease detection and management, as well as understand the medical discrimination sickle cell patients have experienced and how it affects care.
“There is no cure for sickle cell right now, but the diseases and symptoms can be managed with proper care and lifestyle,” Mercedes Narcisse, council member and bill sponsor, said at a stated meeting when the bill was introduced in March. “This program will inform New Yorkers of their healthcare options and increase awareness. I believe it would be critical [to encourage] all New Yorkers, especially the health field, to talk about sickle cell disease and get prevention care.”
The bill would require the New York City health department, in consultation with New York City Health + Hospitals, to develop a sickle cell education program for healthcare professionals working in the city alongside a free genetic screening program for at-risk patients who want to conceive and test for the sickle cell trait.
These programs will address how medical “discrimination has and continues to affect patients and [provider] medical decision-making,” according to the bill. In medical decision-making, providers use test results and other evaluations, alongside a patient’s preferences, to make a diagnosis or treatment plan.
In the US, about 100,000 patients live with sickle cell disease, and one in every 365 Black babies are born with the condition, according to the CDC. The disease causes misshapen red blood cells that look similar to a sickle, and can lead to severe pain and other complications, such as acute chest syndrome and strokes.
“It is a condition which lasts a lifetime,” said John Muthu, director of the Adult Sickle Cell Program at NYC Health + Hospitals/Kings County, in an interview with News 12. “It is very pertinent for these patients from the time they are born all through their lifetime to be closely monitored by one single hematologist, and that’s very important so that nothing is really missed in the proper follow-up.”
However, accessing proper healthcare can be a challenge for sickle cell patients due to a lack of primary care providers who specialize in the disease, a 2019 study from researchers at George Washington University, the Children’s Hospital of Philadelphia, and other institutions found. These patients are more likely to visit emergency rooms for sickle cell disease concerns, according to the study. In 2014, approximately 250,000 emergency room visits and 90,000 hospitalizations in the country were sickle cell disease related, the study found.
But sickle cell patients visiting emergency rooms for pain management may face discrimination and doctors who are unfamiliar with the condition and are reluctant to prescribe pain medication, Stat reported.
The total lifetime costs for commercially insured sickle cell patients can add up to about $1.6 million for women and $1.7 million for men under the age of 65, according to a study published earlier this year from researchers at the University of Washington and other institutions.
New York City isn’t the only jurisdiction considering sickle cell disease legislation. A bill introduced in the New York State Senate earlier this year also aims to promote screening guidelines for the disease.
Hospitals only began screening for the sickle cell gene in 2006, suggesting that there may be large numbers of people who are unaware that they are carriers, according to the state bill. The lawmakers said that education and screening for underserved populations are “necessary to protect future generations of children in the United States.”
Eww. Protecting future generations? They used to call that eugenics.
Today it clicked.
On news radio, CRISPR researchers gushed on and on, practically giddy about splicing human genomes to cure Sickle Cell Disease. They are "inviting partners from healthcare, industry, universities, everyone" to join them.
Lobbying states to screen all those people is starting to make more sense.
You know what they mean by "partners," right?
Just think about how this works.
Media give states and major cities lots of coverage about the underserved, lifetime Sickle Cell costs, etc. (See above article.) Since Sickle Cell and Thallassemia are primarily diseases of African and Mediterranean descent, this adds to the already-active Critical Theory hype of racist healthcare neglect. All this agitation gathers political traction to pass legislation.
The proposed bills round up the entire Medicaid population for testing, and serve them up on a platter to the University or other hospital of choice. The lucky institution gets to develop the treatment protocol and be heroes.
Medicaid pays the whole project and grows its genetic database.
Big Bio-Pharma rakes in the billions.
Policy-makers are heroes to voters in their urban districts, just in time for elections.
Meanwhile, the chronically ill and disabled get Medicaid's leftovers back at the primary care offices and homecare agencies. Employee-based health insurance costs are up 7% this year and predicted to rise for two more years.
All while Sickle Cell cures number in the single digits.
Is this plan treatment, or human experimentation on a grand scale?
First therapy using CRISPR technology will treat sickle cell disease
ByMatty Merritt | December 9, 2023
Previous treatment was limited to bone marrow transplants, but patients often struggle to find matches.
The FDA approved a revolutionary new treatment that could provide nearly 100,000 Americans some relief from the debilitating illness sickle cell disease. Named Casgevy, the medicine is the first FDA-approved therapy to use the Nobel-prize-winning CRISPR gene-editing technology.
How it works:Sickle cell, which predominantly affects Black people, is a disorder in which red blood cells are shaped like crescent moons, or sickles. This causes cells to clump up in blood vessels and leads to severe bouts of pain that some can only manage with opioids like morphine.
Previous treatment was limited to bone marrow transplants, but patients often struggle to find donor matches. With Casgevy, bone marrow stem cells are removed, genetically modified, and infused back into the patient. According to clinical trial results from the FDA, the one-time therapy can eliminate patients’ symptoms for anywhere from one year to almost four years.
The bad news:The life-saving treatment comes with significant risks. Chemotherapy that’s required to prep patients for the procedure essentially turns off their immune system.
It’s also expensive.Casgevy currently costs $2.2 million per patient—and that’s not even including the price of the multimonth hospital stay that accompanies it. About half of all people with the disease rely on Medicaid, whose approval processes vary state-by-state.—MM
As presented at the FDA advisory committeemeeting, of the 31 patients evaluable in theclinical trial, 29 showed significant reductions in VOCs. Moreover, none of the patients receiving Casgevy experienced VOCs that resulted in hospitalization, whereas prior to the trial, SCD patients were averaging 2.7 hospitalizations/year.
These results supported the effectiveness of the therapy. The main issue raised by FDA staff for the committee's consideration was the potential for "off target" gene editing. Cas9 is an enzyme that can create changes to gene sequences in DNA. In the case of SCD therapy, the change created has a therapeutic effect. However, the mechanism for targeting Cas9 within the genome is not perfect and can in some cases result in mutations in genes other than the intended target. It is hypothetically possible that such an "off-target editing" event could contribute to the development of leukemia. The sponsors presented an extensive analysis of the possible off-target effects of Casgevy. Ultimately, FDA determined that the therapy met the safety and effectiveness standards for approval.
However, the technology is still in its early stages, and its long-term safety and efficacy need to be thoroughly evaluated. The sponsors presented plans for rigorous testing and patient monitoring over the next 15 years to address these concerns.
The same caution applies to state gene-collection, imho.
