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DIahanna • Admin
Multiple Myeloma Discussion • March 9
ACA Plans. What may be happenig and how you can add your two cents worth.
This is a post From An Arm and A Leg.. I thought everyone might be interested!!! $31K deductibles on ACA plans? Hey there — When there’s so much big news happening so quickly — like the U.S. suddenly launching a brand new war — a lot of stories can get buried. For instance: In February, the Trump administration proposed rules that would make big changes to how the Affordable Care Act works. One proposal: Allow plans with family deductibles of more than $31,000. And: Encourage people to sign up for them, by making them cheaper — while also making Bronze plans worse. And: Allow plans with no in-network provider. Which could, in turn, lead to much-skimpier subsidies for Obamacare plans generally. So far, The New York Times is the only major news outlet to run a story about this (gift link), which is how I caught wind of it. To understand some details, I talked with Georgetown University expert Katie Keith, after reading her 18,000-word analysis of the new proposed rules. The bottom line: This stuff is real, but it’s not a done deal. Your voice could make a difference. But you’ve got a limited time to pipe up. Let’s go. Pushing $31,200-deductible plans, and making Bronze plans worse. The ACA already allows some super-skimpy plans — called “catastrophic” — that carry super-high deductibles: $10,600 for an individual and $21,200 for a family. Except for some preventative services, those plans cover nothing until you’ve spent that much. The original idea behind catastrophic plans was that only certain people could buy them — adults under 30, and people in fairly specific economic circumstances. “It’s supposed to be a last resort,” says Keith. But the Trump administration wants more people to buy plans like these. In September 2025, it issued guidance making more people eligible. And the proposed new rules would aim to make the catastrophic plans more attractive, by making the monthly premiums cheaper. To do that, they’d bump up the deductibles by about a third: to an estimated $15,600 for individuals and $31,200 for families. At the same time, the new rules would make Bronze plans worse, by jacking up the “out-of-pocket maximum” — the total amount you can spend on medical services for a year — maybe even past those $31,200 limits on catastrophic plans. “For Bronze plans, they don’t propose a limit [on out-of-pocket costs],” Keith says. “They ask whether there should be a limit.” Plans with no in-network providers Another proposal would allow insurers to offer “non-network” plans on Obamacare exchanges. The plan would name a fixed amount they would pay for any given service: A checkup. A colonoscopy. Cancer surgery. Whatever. You find a provider who thinks that’s a reasonable fee? Great. You can’t? Providers in your area want more than that? You end up paying the rest out of pocket. Which could be… anything. Or you just go without. The premiums on these plans would be a lot lower, but … you’d have less protection. Katie Keith says it’s not like traditional insurance. “It’s more like a coupon card,” she told me. How “non-network” plans could reduce subsidies This involves a weird Obamacare detail: How subsidies actually get set. I’ll make it quick. If you qualify for a subsidy, it’s supposed to cap the monthly premium you would pay at a certain percentage of your income — so insurance is affordable to you. But there are lots of plans — Bronze, Silver, Gold, Platinum — all with different prices. Your subsidy is based on the price of just one: The second-cheapest Silver plan. Now: What if there were two (or more) “non-network” Silver plans in your area — with super-low premiums? That second-cheapest non-network plan — which is probably super cheap — becomes the “benchmark.” And subsidies get set super low. Everything else gets less affordable. This is one possible scenario, and nobody knows how likely it is. As Katie Keith asks: “Are there [insurance companies] just waiting in the wings to offer non-network Silver plans? There have been very few offered.” According to the Times story, an Ohio-based company, Sidecar Health, once offered them — but stopped in 2023 when the Biden administration issued rules effectively banning the plans. Obstacles to signing up To qualify for a subsidy, the proposed rules would require extra steps to verify income, and proof of citizenship, and proof that you filed your taxes correctly. “They would bury families in red tape,” says Keith. “All these studies that show adding red tape discourages people from signing up.” In her analysis, Keith notes that the administration tried issuing similar rules around verification last year, but courts rejected them. It’s not a done deal, and you can pipe up If these rules are adopted, Keith expects more legal challenges. For one thing, the proposed $31,200 deductibles would explicitly violate the ACA’s plain language. Meanwhile — and only through next week — you can add your two cents, and make a difference. The feds have a form to submit public comments — and Keith says any final rule has to describe how the administration reckoned with those comments. “If they don’t issue something that responds to the comments they received, they’ll be more vulnerable to a legal challenge,” she says. The deadline for submitting comments is March 13. Here’s that link again, to add yours. Catch you soon. Till then, take care of yourself. — Dan
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Giovinazzo61
Multiple Myeloma Discussion • March 6
CAR T failed
Hi to everyone, my name is Santa I am a caregiver for my husband he is 67year old, we live in New Jersey he got diagnosed in August 2024, with Kappa light chain with high risk cytogenic TP53 abnormality and 1q gain. in June 2025 did stem cells transplant failed in one month. November 2025 did CAR T (Carvicty) it’s been 3 months and his Kappa light chain went from 17.1 mg in February and in March 308 mg. Anyone had a similar experience failed CART in 3 months? What medications you are taking? Any bad side affects? I just want some quality of life for my husband. I appreciate any advice. I feel like having a second opinion from another myeloma doctor.
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chocolateKitten
Multiple Myeloma Discussion • March 6
Managing Care With Multiple Diagnoses?
I turned 40 in 2016. That same year I was diagnosed with a myeloproliferative neoplasm (MPN) with a Jak2 mutation. In the years that followed I have been diagnosed with Multiple Sclerosis and Smoldering Multiple Myeloma. I'm wondering if anyone else has experience, and some advice, for balancing their treatments and care for a variety of chronic illnesses.
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Karen
Multiple Myeloma Discussion • March 5
Bone Marrow Biopsy results
I finally received the last report. All results were pointing to mrd negative until the last one. The one that digs the deepest. I am just above the cut off. So still in a deep remission but not Mrd negative. I was given a few options. 1 - continue with 10 mg lenalidomide 21 days on and 7 off. 2 - drop to 5 mg instead of 10 to help lower some side effects and secondary cancer risks. 3 - add darz shots once a month to try to push me to the negative. I hear that sometimes it will get there on its own with the maintenance med. I am three years post stem cell transplant. Kappa light chain 11:14 trisomy 9. I am taking some time to digest this. Looking for any advice. Thanks!
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Donna
Multiple Myeloma Discussion • March 5
Navigating a Medication Stop
So I had to stop taking my medication for a month so I could get my T cells harvested for car t. I’m a bit worried because I just had bloodwork done after the month and my kappa is normal but my lambda is low and my ratio is high. (4.9) I know that the ratio is the most important. I started my venetoclax back up today and will take the pomolyst tonight. Should I be worried