Building the Writing Muscle

This past weekend in Washington, D.C. for MDA Hill Day, I had the pleasure of meeting and speaking with Ira Walker.  In addition to being an MDA National Ambassador and an entertaining speaker, he also recently published a novel: Torn Branches. 

I asked him about his experience writing a novel and how he did it. Nothing in his background pointed to somebody who I would expect to write and publish a large work of fiction.

He said to me what I've heard several other writers tell me in the past. He said you have to practice. Write for an hour and half every day, he said, and then the writing muscle will grow strong and you'll one day find that you can write a book.

My partner recently wrote a book. Not a novel, but a technical manual: Getting Started With Grafana. I asked him what he thought about Ira's advice. He said that the "write every day" approach would never work for him. However, he's always been very talented with language and explaining complex topics. He's also good at letting deadlines put a fire under his butt. Apparently the publisher was very surprised by how well he met his deadlines, and this is not a typical approach. He said the "write every day" approach sounded like it would work for me temperamentally.

During the COVID era, when I was running Quaranteam, part of what we were offering was a weekly newsletter to our members. Weekly was a bit aspirational. Writing these was challenging - I was sending them on an email distro list to 250 of my friends and friends of friends, what will I say wrong this time? I got thoughtful feedback from one of my Admins when I shared this struggle. She's a counselor, and also has a master's degree in creative writing from Emerson, so I valued her feedback.

She told me that she thought I was struggling because my newsletters were always written from the heart.

To give you an example from September 2020:

We might feel overwhelmed.  We might feel isolated.  But we are together.  We might not see the impact of our work from where we stand now, but it is vital for the future that we are building together.  Like it or not, we are living through history right now.  We are at a critical juncture to shape the world for decades to come, even though we might never have the perspective to fully appreciate the trails we are blazing or understand how they all intertwine together.

Wow, listen to me go! Somebody get me a pulpit! No wonder I found writing these draining, I was always shooting the moon. Wish me luck, maybe I can learn how to deliver consistency.

eAPTCs Helping People Living with Disabilities

This past week I had the opportunity to visit my lawmakers on Capitol Hill in DC with the Muscular Dystrophy Association (MDA). At this MDA Hill Day event, people from 26 states met with their lawmakers and advocated for issues important to people living with neuromuscular disease (NMD) and their loved ones.

Specifically, we were asking our lawmakers to protect enhanced ACA premium tax credits (eAPTCs), support NIH funding, and cosponsor the Alleviating Barriers for Caregivers (ABC) Act. I found it interesting that the MDA had opted to include eAPTCs as an issue to advocate for - do people living with NMD even use these?

ATPCs are the mechanism by which the ACA makes premiums for health insurance policies purchased on health insurance exchanges affordable. They work by comparing your household income to the price of a benchmark plan available on the exchange. The benchmark plan is the second least expensive silver tier plan available in your zip code. Households are then given tax credits in the amount which would make this benchmark plan mathematically "affordable," and these credits can then be applied towards any plan on the exchange. Since their implementation under the ACA in 2014, households earning less than 400% of the FPL ($60,240/year for a family of one in 2025) have received this form of premium assistance on a sliding scale.

Enhanced ATPCs were introduced in the American Rescue Plan Act (ARPA) of 2021 in response to the continuing COVID pandemic and were later extended through 2025 in the Inflation Reduction Act of 2022. eAPTCs opened premium assistance to higher income families that had previously been excluded from any financial assistance when purchasing private health insurance policies through the exchange. With eATPCs, households do not need to pay any more than 8.5% of their total household income towards the benchmark plan. This applies to all households earning more than 400% FPL (with a handful of other eligibility criteria, such as approved immigration status).

With 2025 coming to a close, eAPTCs are at risk of ending. For over a month now, the federal government has been shut down because the majority party (Republicans) in both the House of Representatives and Senate are refusing to include these tax benefits for middle class households in the stalled funding bill.

But back to the MDA. NMDs are progressive diseases characterized by muscle weakness and loss of function. People living with childhood onset NMDs typically qualify for automatic Medicaid eligibility through the SSI program. People living with adult onset NMDs are able to qualify for Medicare coverage 24 months after the social security administration (SSA) deems them "disabled." With SSI Medicaid and Medicare available, why do eAPTCs matter to people living with NMD?

I found a resounding answer when I spoke with a married couple from Illinois at MDA Hill Day. She has ALS (Amyotrophic Lateral Sclerosis) and he takes good care of her.

Considering how rapidly ALS can progress, it is one of only two diagnoses which allow people to skip the 24 month wait for Medicare eligibility (the other being end stage renal disease (ESRD)). I asked this couple if their experience matched this - how immediate was her Medicare coverage in practice?

"She doesn't qualify for Medicare," was his response. 

"What?" I said, "Oh no! Does she not have the 40 quarters of work history she would need to qualify?"

"Bingo," he said, "And in order to qualify for Medicare spouse benefits under my own work history, she needs to be 62. She's 58."

"Oh no," I said. "And at your ages and at this point in your career, I'm sure you have too much in assets to qualify for Medicaid through SSI..." (a married person with a disability cannot qualify for SSI Medicaid if the couple has more than $3,000 between them). "How do you get her health insurance?"

"We get her health insurance through the exchange," he said. "We're using the enhanced tax credits this year, and her health insurance is $600 a month. Next year, if they're not renewed, we'll be paying $1,400 a month." 

Their story really hammered home for me how important it is for everybody to have access to affordable health coverage. I had been thinking of people like myself - comfortable Americans without children who really just need health insurance as a safety net in case of catastrophe. I want high-quality affordable health coverage to be consistently available to me and my peers. However the political narrative likes to malign people in my situation - my asking for assistance is literally the same as stealing the food out of the mouths of some Dickensian child strawmen, or so they try to tell us.

eAPTCs help everybody. By extending tax credits to middle and upper income families which make health insurance premiums affordable, the system benefits. More people in the risk pool means more predictable annual costs. Proactive preventive health care that people can afford leads to fewer ER visits and better long-term health and system cost outcomes. And finally, relaxing APTC eligibility requirements for everybody creates a safety net, and it means that people who really need regular care won't lose access to affordable coverage if they fall through the cracks of other programs.