Families Like Mine Need Medicaid to Work Smarter, Not Smaller
—A caregiver’s journey through hope, policy, and the fine art of precision reform—
A Night in the ICU
It is just past midnight. The monitors chirp in sync with my son’s oxygen line while the hallway fluorescents pool under the door. My husband and I stand watch—half parents, half field medics—waiting for the next vitals check. We have spent years in rooms like this, learning the unspoken language of cystic fibrosis: the cough frequencies, the enzyme counts, the quiet panic of a pulse oximeter that drops one point too far.
Most nights I whisper the same silent thanks: we still have coverage. Forty percent of families battling CF, like ours, survive the financial toll because Medicaid stands between them and bankruptcy—or worse. The program is not charity; it is the rope we grip while science races ahead with breakthrough drugs and new lungs in cold-storage coolers. If that rope frays, all the progress unravels with it.
A Bill With a Double‑Edged Scalpel
This week the Senate will decide whether to tighten that rope or splice new strands. The so‑called “Big Beautiful Bill” arrives with promises to trim waste and demand work—but beneath the slogans lie four changes that would redraw the map of American illness:
Monthly work‑reporting rules that history (see Arkansas, 2018) shows will drop thousands for paperwork glitches, not laziness.
An average of $40 copay for every clinic visit or therapy session, the sort of toll that makes parents choose between a lung function test and a light bill.
A cap on the "provider taxes" hospitals use to keep Medicaid afloat, a move that will push states to slash eligibility or shut specialty wings.
Rollback of enhanced Marketplace tax credits, closing the fragile bridge for families who earn just a hair too much for Medicaid but nowhere near enough for private premiums.
None of these cuts laser‑target fraud. They simply hand the bill to patients who already owe more than their bodies can pay.
Why Every Family Should Care
Cystic fibrosis makes a dramatic case study—daily airway clearance, digestive enzymes, four‑figure specialty meds—but swap in cancer, lupus, long COVID, autism, or spinal‑cord injury and the plot stays the same: miss a renewal letter, skip a copay, lose coverage, spiral. Even families once solidly middle‑class can fall into survival mode after a single missed paycheck or an unexpected diagnosis.
And when federal dollars vanish, states must patch the hole. Few governors have the bandwidth—or the surplus—to shoulder that overnight. Waiting lists lengthen, specialists leave networks, and the ICU lights glow hotter for longer.
The Remote‑Work Lifeline
I am not blind to remote work’s dark corners. I have shouted into government help‑lines that rang unanswered, watched rookie staff lose mentorship, felt the cohesion of a team dissolve across time‑zones. Yet remote work also saved my family.
Our daughter finished university because New Jersey’s Division of Vocational Rehabilitation Services (DVR) paid a large share of her tuition. DVR is state-led and partially federally-funded program from the department of labor that supports individuals with disabilities and chronic conditions that can interfere in someone’s ability to make a living. Today she has a blossoming career from a sun‑lit home desk, pays her own taxes, and—so far—needs no public aid. My husband and I log into our own jobs from our own home offices, ready to swap laptops for nebulizers the moment alarms sound in the den. Remote work did not cure our son, but it bought us the one commodity chronic illness steals first: time together.
DVRs nationwide could launch thousands more stories like ours—if Congress ties any verified Medicaid savings to expanded training grants, home‑office stipends, and partnerships with remote‑first employers who understand that productivity can pulse between IV drips.
Voices Across the Divide
Listen Here -
You can hear this argument from differing and shared experiences on the new episode of “Why Should I Trust You?”—the rising podcast hosted by journalists, producer Brinda Adhikari and Tom Johnson with oncologist Mark Abdelmalik, MD. I joined the panel alongside my dear friend Sue Teitelbaum in defense of her daughter, parent advocate James Cummings, mother to adult son with autism and seizure disorder, Nancy Fuller , public‑health leaders; Dr. Reed Tuckson, founder of Coalition to Build Trust in Health and Science and physician, Dr. Megan Ranney (Dean, Yale SPH), Dr. Craig Spencer, associate professor Brown University and ER doctor, and Ohio grassroots MAHA organizer Elizabeth Frost. We had a hard conversation that many have not heard before, we shared one baseline truth: health policy is personal, and precision matters.
A Smarter Prescription
I am not asking the Senate to kill the bill; I am asking them to wield the scalpel with intent:
Bank the fraud savings in a Medicaid Transitional Fund that can patch state gaps and modernize antiquated systems.
Super‑charge DVR, funneling grants toward remote‑compatible careers for patients and caregivers.
Automate medical exemptions so no one with a feeding tube or a life-threatening condition loses coverage for missing a password reset email.
Keep premium tax credits alive, because stability is cheaper than crisis.
Your Turn at the Microphone
Call and write your Senators (202‑224‑3121) . Ask for a bill that roots out fraud without cutting the rope. Educate them on how this can impact the lives of those dependent on Medicaid programs.
Press your governor and state reps. Federal withdrawals become state headaches—are they ready?
Share your story. Statistics fill spreadsheets, but stories move votes. Write op-eds or a substack (we would be happy to share your story at HRUSA, go on podcasts, post on social media, speak to friends and the public.
We can build a Medicaid that works smarter—a bridge to independence, not a pit of paperwork. But only if we hone the blade, not swing the axe.
About the Author
Jacqueline Capriotti is a political and PR strategist at the intersection of health, agriculture, and food systems. She served as National Director of Chronic Illness Outreach for Robert F. Kennedy Jr. and helps steer the Make America Healthy Again (MAHA) coalition. Through Health Revolution USA she advises on patient‑centric policy, while her Victory Garden Alliance revives the WWII spirit of local food resilience—aiming for 20 million gardens strong.