Dear Leader Thune, Chair Crapo, Leader Schumer, and Ranking Member Wyden:
On behalf of the Cystic Fibrosis Foundation, we write to express our grave concern and strong opposition to the House reconciliation package that will destabilize two crucial sources of coverage — Medicaid and the marketplace — causing people with cystic fibrosis to lose access to critical, lifesaving care. This one-two punch will terminate coverage for people on Medicaid while also making it more expensive to enroll and maintain coverage in the marketplace. As a result, some people with CF will be sicker and potentially suffer from premature death.
As this package moves forward, we strongly urge the Senate to have an open debate on these policy issues that impact people with CF and reject budget cuts that will terminate health care coverage for millions of Americans.
About Cystic Fibrosis and the Foundation
Cystic fibrosis is a rare genetic disease that affects nearly 40,000 people and can affect every racial and ethnic group in the United States. In people with CF, mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene result in a buildup of thick mucus in multiple organ systems, leading to lung damage, life-threatening infections, and other complications. There is no cure for CF.
Through the successful development of multiple transformative therapies and careful, aggressive, and continuously improving disease management over several decades, the average life expectancy for people with cystic fibrosis has risen dramatically. These gains reflect over 50 years of focused work to improve CF treatments, develop evidence-based standards of care, and encourage adherence to a lifetime of chronic care. However, this system of care and the improvements in length and quality of life for those with CF can only be realized if patients have access to essential specialized care and services.
Impact of House Reconciliation Bill on People with CF
For months, House leaders promised the reconciliation bill would not cut benefits or access to care for the “population Medicaid was originally designed for,” such as people with CF. Unfortunately, that’s exactly what this bill does, and more. As written, the House bill:
- Burdens people with CF with unprecedented, onerous red tape across Medicaid and the marketplace through increased verification and redetermination requirements, making it virtually impossible to enroll and stay covered. One provision may improperly disenroll working people with CF from Medicaid due to administrative error and increased scrutiny with work reporting requirements. Another proposal could leave infants uninsured during a critical CF diagnostic and treatment window while they wait for Medicaid to verify documents, putting them at risk of worse health outcomes compared to newborns who are able to begin treatment early in life. People with CF who are eligible for coverage will be caught in interlocking, punitive policies.
- Exposes people with CF to higher costs through inflicting cost-sharing on critical services for some Medicaid enrollees, imposing premium penalty on marketplace auto-enrollees, and letting premium tax credits expire. Costs frequently force individuals and families affected by CF to make difficult financial tradeoffs — decisions that can have profound short- and long-term impacts on health and overall well-being.
- Reduces states’ autonomy and ability to support people with CF through finance restructuring — forcing states to limit benefits people with CF rely on. Many benefits people with CF and their families rely on are optional — including prescription drugs, over-the counter vitamins and supplements, and medical supplies. Jeopardizing these benefits would be devastating for the CF community.
According to the Congressional Budget Office (CBO) 15.8 million people, if not more, will lose health coverage. Republican House members claim that this number is made up of 1.4 million illegal immigrants, 4.8 million able bodied adults choosing not to work, and 1.2 million individuals who are ineligible but are currently enrolled. This is a misrepresentation of the CBO analysis. Even if those numbers were accurate, there are still at least 8.4 million people being disenrolled, including people with CF, from health coverage they are eligible for in the name of fraud, waste, and abuse. We strongly oppose the House bill as written and outline below specific policies in this bill that will harm people with CF.
Medicaid and CF
Medicaid is a crucial source of health coverage for people living with CF; half of all children and one-third of adults across the country rely on Medicaid for some or all their health care coverage. Many people with CF use Medicaid to supplement private insurance they receive from their employer or the marketplace. Others may receive Medicaid and Medicare benefits simultaneously.
Since CF is a progressive disease, access to consistent multi-disciplinary care and specialized therapies is essential. Gaps in Medicaid coverage — even for as little as one month — may put people with CF at risk of declining health, including increased lung exacerbations, irreversible lung damage, and hospitalizations. Medicaid coverage is a lifeline for many people with CF. Despite promises to spare people with life-long, chronic conditions like CF, children, seniors, and caregivers, experience demonstrates otherwise. The cuts to Medicaid would unravel years of progress in helping people with CF gain access to lifesaving health care and decimate this crucial program that the CF community relies on.
Importance of Medicaid to the CF Community
For people with CF and their families, Medicaid is a lifeline.
- “My 12-year-old son, Matthew, has cystic fibrosis and eosinophilic esophagitis. He also cannot tolerate modulators, meaning he continues to battle serious infections and frequent hospitalizations. In 2018, my husband's insurance switched, and we were suddenly told that all Children's Wisconsin providers were out of network — meaning we could no longer see his established specialists in ENT, GI, or Allergy, nor could we use Children's for lab work and scans. The logistical and financial burden was overwhelming. With the CF clinic’s support my son was accepted to Wisconsin’s Katie Beckett Medicaid program. The process of qualifying is exhaustive. The paperwork is extensive, and it even includes a home visit. Frankly, I couldn’t ‘cheat the system’ even if I wanted to — it was that rigorous. This program has been a lifeline—not only reducing our out-of-pocket costs but also easing the nightmare of coordinating care across multiple providers. We are just middle-class people living in the suburbs doing our best to take care of our family. I truly don’t know what we’ll do if our son loses access to Medicaid.” – Laura Drummond, Wisconsin
- “My eight-year-old son, Edward, is living with cystic fibrosis. He has primary insurance through my husband's work and also receives Medicaid as a secondary insurance. He was born two months premature and spent nine weeks in the NICU. This was his first of many hospital stays and also included an emergency surgery at 36 hours old to save his life. I had a doctor look me in the eyes and tell me he didn’t know if my son was going to survive the night. I performed CPR on my son while I waited for the code team to come into his room. I am still dealing with the trauma from the first two months of his life, the one thing I am not dealing with is medical debt specifically because of Medicaid. Before Medicaid, the bill I received from the hospital was over $750,000. After Medicaid, I paid $500. Medicaid has saved our family.” – Julie Klima, Michigan
These are not hypotheticals — they are everyday realities for people with CF and their families who count on Medicaid. For more real-world examples, please see the attached appendix of testimony provided by members of the CF community.
Burdening Patients with More Costs and More Paperwork
Increasing costs, red tape, and paperwork for people with CF who are eligible for Medicaid are solutions in search of a problem. These proposed policies will not reduce fraud, waste and abuse, but rather impose crushing bureaucracy on people with CF and their families who are already heavily burdened, leading to worse health outcomes, increased medical debt, and strains on our health care system.
Requiring Work Reporting Requirements
The House proposal would impose work requirements on certain Medicaid enrollees by mandating states add requirements to their state Medicaid plans. Many enrollees — primarily low-income adults — would be newly required to show that they are working, doing community service, or enrolling in an education program for at least 80 hours each month. Proof would be required when an individual first applies for coverage, as well as for those already enrolled in order to maintain their coverage. States would have to verify work requirements before individuals can enroll and on at least a semi-annual basis thereafter. Those who are unable to satisfy the work requirements paperwork would also be blocked from receiving advance premium tax credits (APTCs) in the marketplace, meaning marketplaces too would have to process additional paperwork to assess eligibility. This paperwork burden will deter many people from seeking coverage at all.
Evidence has consistently demonstrated that requiring Medicaid enrollees to provide proof of employment leads to widespread coverage losses, increased administrative burdens, and significant financial costs to the state — without achieving the intended goal of increasing employment. In addition, 91% of Medicaid enrollees are already workers, students, caregivers, or individuals who are not working due to illness or disability. States that have tried to implement this policy fail in achieving Medicaid’s core mission to provide health coverage for eligible individuals. In Arkansas, more than 18,000 Medicaid enrollees lost coverage in the nine-month period during which the work requirement was in effect. Many Medicaid enrollees found the reporting process confusing or inaccessible, and people who lost coverage reported delaying care and skipping medications because of costs, as well as incurring serious medical debt. In Georgia’s newly enacted Pathways to Coverage program, work requirements only apply to people newly eligible for Medicaid. In the first year, only 4,231 people enrolled in Medicaid through the program, well below the projected 100,000 enrollees. Unlike other proposals, Georgia’s work requirement policy does not systematically exempt populations, and research shows that the state’s stringent requirements for documenting and reporting work hours contributed to the low enrollment numbers.
While people with chronic illnesses like CF may be exempt from work requirements, we know exemptions for people with disabilities and caregivers often do not function as intended. Exemptions may not happen automatically and can require complex paperwork (which may include documentation from a health professional determining the individual is “physically or mentally unfit for employment”) and regular recertifications even for those with chronic life-long conditions, like CF. Individuals risk losing coverage if there are administrative errors or their application is not completed or processed in time. As a result, eligible individuals, like people with CF who qualify for an exemption, can be improperly disenrolled.
In addition, not all people with CF qualify for Medicaid through an exemption, rather gain access to Medicaid based on their income in the expansion population as seasonal workers, service workers, direct care workers or gig workers (to name a few). People in these industries have limited to no control over their hours. The ability to work for people with CF can vary over time with changes in health. As the bill is written, states could (1) require people to satisfy the work requirements for each of an unlimited number of consecutive months prior to application in order to enroll; (2) require individuals to satisfy the work reporting requirements as frequently as every month between every mandatory six-month redetermination; and (3) require more frequent verification and checks (rather than just during each redetermination) that individuals are satisfying the work reporting requirements. Missing just one of these requirements can trigger disenrollment. A person with CF who has a pulmonary exacerbation and is unable to work one month could be kicked off of Medicaid. This which could lead to missed essential care, accumulating medical debt or cutting back on necessities such as food and rent, not to mention additional costs to the health care system to treat a much sicker person as a result of delayed or missed care.
Work reporting requirements are simply a means to deliver budgetary savings by terminating eligible individuals' health care. Work requirements have been proven to be economically inefficient and ineffective, medically imprudent, and ultimately inhumane as they deny people the health care they need. We strongly urge Congress to reject this proposal.
Mandating Cost-Sharing Requirements
Research shows requiring Medicaid enrollees to pay cost-sharing requirements creates barriers to care and coverage, lead to higher disenrollment, and are not associated with substantial cost savings. All expansion enrollees have extremely low incomes and decades of research has shown that even low copays substantially reduce access to needed care.
Adding to the significant cost burden already experienced by people with CF, additional fees could cause them to delay or skip treatments. According to a 2024 study conducted by the Cystic Fibrosis Foundation and Dartmouth College, over a third of people living with CF delayed or went without at least one aspect of their CF care in the last year — including skipping medication doses, taking less medicine than prescribed, delaying filling a prescription, or skipping a treatment altogether — due to cost concerns. As part of the CF Care model, patients have quarterly visits with their care team — which may include appointments with physicians, nurses, respiratory therapists, dietitians, social workers, physical therapists, mental health providers, and genetic counselors. If a state imposes a $35 copayment per service per visit, it may lead to patients skipping appointments, seriously jeopardizing their health and leading to costly hospitalizations and fatal lung infections.
We urge Congress to reject this proposal.
Increasing Eligibility Verifications and Redeterminations
The House bill would require states to double the frequency of eligibility checks, from the current annual renewal requirements to once every six months, for Medicaid expansion enrollees. This will increase state administrative expenses, create more burden for eligible workers, and cause individuals to lose coverage due to a clerical error and excessive red tape. The more frequent the eligibility checks, the more likely people who qualify for Medicaid would be disenrolled. People with CF know first-hand how redeterminations can improperly disenroll eligible individuals. There are multiple steps in the eligibility determinations, notices of the determination process are often long, sometimes with conflicting information, and often unclear what steps families need to take to ensure continuous coverage or to contest a redetermination decision. Frequent churning on and off Medicaid leads to gaps in care —especially for people with CF — that increase hospitalizations and emergency department use. We urge Congress to reject this proposal.
In addition, the House bill is seeking to implement immediate proof of citizenship for Medicaid eligibility such as Social Security cards and birth certificates — instead of allowing a “reasonable opportunity period” of 90 days. This eligibility verification, on top of this bill’s reduced retroactive coverage period to 30 days, could significantly hinder access to essential care for newborns who may have CF. States screen newborns for a variety of conditions that need urgent treatment, including CF. If a newborn screening (NBS) test is positive for CF, a sweat test is then used to confirm or rule out the diagnosis. The CF Foundation Diagnosis Clinical Care Guidelines recommend that babies with a positive newborn screen should have a sweat test performed by the age of four weeks to ensure that any health issues or changes can be found early and treated quickly. Typically, it takes six to eight weeks to receive a Social Security card for a newborn. Wait times for birth certificates vary by state but may take up to four to six weeks. This House provision will leave infants uninsured during a critical CF diagnostic and treatment window while they wait for Medicaid to verify documents, putting infants at risk of worse health outcomes compared to newborns who are able to begin treatment early in life.
Delaying Implementation of the Medicaid and CHIP Eligibility and Enrollment Final Rule
Last year, the Department of Health and Human Services (HHS) issued a final rule that simplifies the eligibility and enrollment process for Medicaid and the Children’s Health Insurance Program (CHIP). The rule eliminates certain access barriers for children enrolled in CHIP; makes transitions between programs easier; aligns and strengthens enrollment and renewal requirements for most individuals in Medicaid; establishes beneficiary protections related to returned mail; creates timeliness requirements for redeterminations of eligibility; addresses other outdated barriers to coverage; and modernizes record-keeping requirements. For example, prior to the rule, states were able to impose lockout periods for nonpayment of premiums, waiting periods, and annual and lifetime limits on CHIP services.
The CF Foundation supported this rule and asked for swift implementation. The rule reflects lessons learned by states following the end of the public health emergency — a process that laid bare the weaknesses and inefficiencies of various state eligibility systems that led to millions of individuals losing their health coverage, including people with CF. Stalling the adoption of these rules entrenches failed policies and practices that perpetuates enrollment problems for children, pregnant women, and people with disabilities — the Medicaid population Congress is claiming to protect.
Eliminating Coverage and Benefits through Federal Finance Restructuring
Any proposed restructuring of the federal contribution to Medicaid is simply shifting costs to states they cannot maintain. Unlike the federal government, most states are required to maintain a balanced budget. The House bill moved up the deadline for many changes to December 31, 2026, giving states, many of whom are on a two-year budget cycle, insufficient time to adjust. Therefore, federal Medicaid funding cuts under consideration will force states to cut eligibility or reduce benefits for workers with low incomes, children, seniors, and people with disabilities.
States are only required to cover a limited number of mandatory benefits. Many benefits people with CF and their families rely on are optional and jeopardizing these benefits would be devastating for the CF community. These optional benefits include, but are not limited to:
- Prescription Drugs: Recent therapeutic advances have transformed cystic fibrosis — adding decades of life and new hope for people living with this life-threatening disease. On average, people with CF rely on three oral and three inhaled prescription medications daily. This treatment regimen can be expensive even for individuals with comprehensive insurance. For many, Medicaid is a lifeline to ease that financial burden.
- Medical Equipment and Supplies: People with CF use a high-frequency chest wall oscillation vest to help loosen the thin mucus in their chest wall, making it easier to clear the airways. Vest treatments can be used twice a day, or more, based on physician recommendations. These vests can be very expensive without the support of Medicaid.
- Over-the-Counter Products: People with CF often require vitamin supplements, particularly fat-soluble vitamins A, D, E, and K, due to malabsorption caused by pancreatic insufficiency. In addition, in order to gain and maintain a healthy weight, people with CF need up to twice the amount of daily calories as others who are of similar age and weight. In some cases, nutritional supplements may be recommended by a CF dietitian as the best way to boost calories. Some states cover these over-the-counter products through their Medicaid program, removing one more barrier for individuals with CF to live a full and healthy life.
Without access to these benefits, people with CF will struggle to cover their full cost of care.
Reducing Provider Taxes
Medicaid is jointly financed by the states and the federal government, and states have the flexibility in how they finance their share of Medicaid costs. States rely on a number of funding sources including dedicated taxes, funding from local governments, and taxes on health care providers. Every state, except Alaska, uses provider taxes to help fund their Medicaid program — helping cover the Medicaid expansion population, support important benefits for people with CF like nutritional supplements, and sustain rural safety-net providers. Freezing provider taxes and eliminating the option for states to account for unforeseen expenses will force states to deeply cut Medicaid eligibility and services.
Shrinking Federal Medical Assistance Percentage
Reducing the federal medical assistance percentage (FMAP) match rate for Medicaid expansion would cause immense financial strain on states to make up the difference. For the traditional Medicaid population, FMAP rates vary by state and are largely based on each state’s per capita income. The statutory minimum FMAP contribution is 50%, but it can provide up to a statutory maximum of 83% for lower-income states. The CBO estimates that in response to cutting the Medicaid matching rate, no states would opt to newly expand Medicaid and some would drop expansion completely. Moreover, research shows with such a financial burden, states would be forced to raise taxes or cut Medicaid coverage for some groups entirely.
Furthermore, several states have “trigger laws” tied to the FMAP. In Arizona, Arkansas, Illinois, Indiana, Montana, New Hampshire, North Carolina, Utah and Virgina, lawmakers are required to end expansion if the FMAP drops below 90%. New Mexico, Iowa, and Idaho have provisions requiring legislative review and reconsideration of expansion if the FMAP is reduced. Should this happen, millions of individuals will lose coverage. If Medicaid coverage were to return to pre-expansion levels, approximately 7.5% of all adults with CF will lose Medicaid coverage immediately.
Reducing states’ FMAP rates will lead to fewer enrollees, disruption in treatments, and worse health outcomes. We urge Congress to reject these cuts to Medicaid.
Affordable Care Act Marketplace and CF
The Affordable Care Act (ACA) includes critical patient protections such as ensuring people with CF cannot be denied coverage, charged more, have their benefits limited, or be subjected to annual and lifetime limits on their coverage simply because they were born with CF. As the proportion of adults with CF entering the workforce increases due to improvements in overall outcomes, access to comprehensive coverage is essential. Every year, more and more members of the CF community look to the marketplace for affordable, comprehensive coverage. Congress must take steps to ensure people with CF and their families are able to access and afford high-quality insurance options offered on the ACA marketplaces.
Destabilizing the Individual Marketplace
Congress is considering a number of changes that will destabilize the marketplace. Between the House reconciliation package and expiration of the enhanced advanced premium tax credits (APTCs), enrollment in the marketplace will drop by approximately 8 million — one third of marketplace enrollees. The ACA provisions in the House bill would limit and outright remove enrollment options, create red-tape, and make comprehensive coverage more difficult to obtain. Instead, Congress should focus on keeping comprehensive coverage affordable by extending the enhanced tax credits to help patients and their families. We are deeply concerned by this backwards approach.
If Congress seeks to cut down on fraud, waste, and abuse, they should increase oversight and establish safeguards and deterrents for agents and brokers. In a recent study, HHS found these bad-actor agents and brokers are fraudulently enrolling people in a marketplace plan or switching an enrollee from one plan to another without these individuals’ knowledge or consent in order to obtain additional commissions. This is deeply disturbing. The magnitude of unauthorized plan switches and enrollments that HHS has documented suggests that either enrollee consent is not being verified in a timely manner before commissions are paid, or that consent is obtained for the first plan purchase but not for subsequent switches to different plans. Over the last few years, the CF Foundation Compass call center has seen a number of cases of brokers misleading or providing misinformation to parents of kids with CF about what is offered in a plan, as well as cases where a person with CF was switched to a different plan midyear by a broker without their consent. As outlined previously, there are a number of steps Congress and HHS could take to establish new safeguards and deterrents against agents and brokers, ensure bad-actors are held accountable, and mitigate risk to consumers. Instead, this legislation is targeting patients, like people with CF, who are trying to access their essential care. We ask Congress to reject the following proposals.
Restricting Enrollment Opportunities for Patients
Reducing Open Enrollment Nationwide
A longer open enrollment period gives all consumers — existing enrollees, un-enrolled healthy individuals, and members of underserved communities — more time to learn about their options and select a plan suited to their needs. The current 75-day open enrollment period is especially important for consumers who are set to receive a lower subsidy than the prior year. Because these consumers may be auto-reenrolled, they would be able to change plans and select a more affordable option. Further, state-based marketplaces that have allowed open enrollment into January see continued consumer interest but have not faced adverse selection. In fact, these changes would discourage younger, healthier people from enrolling, ultimately driving premiums up for the people who need continuous coverage, like those with CF. We strongly urge Congress to keep the open enrollment period open for the current 75 days.
Eliminating Low-Income Special Enrollment Period
In light of evidence that many uninsured individuals had not enrolled in marketplace coverage because they were unaware of their insurance options or eligibility for federal premium assistance, HHS established a special enrollment period (SEP) for certain consumers at low incomes. The SEP, designed particularly for premium tax credit-eligible individuals with projected household incomes at or below 150% of the federal poverty level, was intended to provide these otherwise eligible consumers with additional opportunities to enroll in low-cost coverage. This SEP has helped many low-income Americans secure affordable coverage.
Recently, HHS claimed the low-income SEP is responsible for a large number of improper enrollments, meaning (1) fraud or misconduct by agents and brokers, or (2) low-income Americans “taking advantage” of the SEP. However, the House bill proposes no oversight or enforcement of bad-actor agents and brokers who fraudulently enroll people. Instead, the proposal targets patients.
HHS’s recent analysis that there are too many people enrolled in marketplace coverage relies on faulty data, including the inaccurate assumption that actual enrollments above their estimate of eligible consumers between 100-150% FPL are improper. Among its shortcomings, this analysis ignores that eligibility for the APTCs and for the low-income SEP is based on projected annual household income. While a person’s expectation of what their household will earn over the course of the year might end up matching their actual income, it also might not, and there is nothing inherently improper about failing to hit that target. For many millions of Americans, and particularly for those with lower incomes, it is exceedingly hard to project your household’s annual income. For example, people who are self-employed, perform seasonal work, or otherwise provide labor or services on demand, income may vary dramatically over the course of the year in ways that are not necessarily predictable and not within the worker’s control. Furthermore, millions of Americans earn hourly wages but have limited or no input on the number of hours they work. The result is that most low-income workers experience significant instability in work hours and income, with large and often unpredictable swings from one month to the next.
And yet the House proposes to scrap the low-income SEP based on the notion that a low-income American whose annual household income winds up being different from what they expected has done something improper and is “taking advantage.” We fundamentally disagree and urge Congress to reject this proposal and focus instead on fraud and misconduct by agents and brokers.
Eliminating Auto-Reenrollment
The House bill penalizes individuals who auto-reenroll in marketplace plans. For 2025, 10.8 million people — approximately 45% of returning enrollees — auto-reenrolled in their coverage, with the majority of them receiving APTCs. This bill includes multiple overlapping and confusing ways of prohibiting auto-reenrollment that would disrupt access to care for millions of people who are used to being auto-reenrolled into marketplace coverage, including people with CF. Specifically, the proposal requires enrollees with a zero-dollar premium (after APTCs) who are automatically reenrolled to proactively verify their ongoing eligibility for fully subsidized plan or face an arbitrary $5 monthly penalty until they actively confirm their eligibility. This provision, alongside the pre-enrollment verification described below, effectively ends auto-reenrollment. We strongly urge Congress to reject these proposals that make it more difficult for people with CF to enroll in comprehensive coverage.
Increasing Income Verification Requirements and Denying APTCs
For millions of Americans, particularly those with lower incomes, it is exceedingly hard to project what their annual income may be. For example, those who are self-employed, perform seasonal work, or otherwise provide labor or services on demand, income may vary dramatically over the course of the year in ways that are not necessarily predictable or within the worker’s control.
The House proposal would require individuals to submit additional paperwork before they can enroll and deny APTCs to certain consumers whose annual household income projection cannot be immediately verified with old tax return data. This latter policy would apply to (1) people who, according to old tax data, had income below the poverty line, but who project that they will earn more than that amount in the coming year; and (2) people for whom IRS systems cannot find a tax return match. There are many reasons why tax information may not be readily available (such as changes in family size or filing status, name changes, mismatches in demographic information) and this type of action disproportionately affects low-income individuals. HHS research shows the burdens are likely to deter young and healthy people (but not individuals with immediate coverage and care needs) and therefore lead to a sicker and more expensive insurance market.
Restricting Guaranteed Issue and Repayment of Past Due Premiums
Beginning in 2026, the House bill proposes to amend guaranteed issue — a fundamental protection enshrined in the ACA to ensure individuals with chronic conditions, like CF, are not denied coverage. We are disappointed that the House proposal allows issuers to deny coverage to people who the issuer says owe it, or a related entity, premiums. We are especially alarmed that the House bill would go even further by removing any time limit within which an asserted premium debt could be used to deny a consumer coverage. Current policy allows consumers to still have coverage if at least 95% of their premium payment is paid, and in a given month, issuers can consider enrollees to have paid their full premium if they’ve paid at least 98% of their premium or have an unpaid remainder of $10 or less. In contrast, the House bill permits issuers to require payment for the first month’s premium, as well as any unpaid past-due premium before effectuating coverage. By permitting issuers to condition enrollment on payment of premiums for an old coverage policy, this proposal would grant significant authority to issuers at the expense of patients and in violation of the core intent of the statutory guaranteed availability of coverage requirement. We strongly urge you to reject this proposal.
Expiring Enhanced Premium Tax Credits
These threats to coverage combined with the pending ACA tax credit cliff will hit low- and middle-income patients and families the hardest. As part of the American Rescue Plan Act in 2021 and subsequently through the Inflation Reduction act of 2022, Congress created and then extended enhanced tax credits, lowering premiums and making coverage possible for millions of Americans, including people with CF, whose coverage was previously unaffordable. The expiration of the enhanced APTCs is expected to cause marketplace enrollees’ out-of-pocket premium payments to increase by over 75% on average, with people in some states seeing their payments more than double on average. Instead of eliminating access through policies outlined above, Congress should focus on making comprehensive coverage more affordable by extending the tax credits to help patients and their families.
Regulatory Moratorium on Artificial Intelligence
Artificial intelligence (AI) is changing many facets of health care and being rapidly adopted by payers and providers. AI is being used to automate a host of functions, including prior authorization (PA), implementing disease management programs, and fraud claim detections. While implementation of AI holds potential to help alleviate administrative burden for providers and improve operational efficiencies and patient health outcomes, this is a pivotal moment for regulation to ensure these technologies are used responsibly and fairly, and do not harm patients.
As the health insurance industry continues to invest in AI tools, state and federal regulators have struggled to keep up, leaving an uneven regulatory landscape. Whether state or federal, efforts to regulate this ever-changing area must balance the desire for innovation with the need to protect patients from any potential adverse effects. For example, an AI tool implemented by a major health insurance carrier had a 90% error rate in prior authorization, leading to thousands of enrollees being denied medically necessary care. At least 42 states have introduced legislation primarily focused on transparency, disclosure, and creating state-level bodies to better understand the use of AI, with Kentucky, Mississippi, New York, and Mississippi already signing legislation into law this year.
Therefore, we do not understand the House bill’s attempt to bar policymakers and regulators at all levels of the government from taking appropriate steps to regulate these technologies and protect patients. Instead, Congress should work closely with the states to develop appropriate regulatory structures for the use of AI.
We are deeply concerned the proposed budget reconciliation language will lead to unsustainable cuts to Medicaid and the marketplace — endangering essential care for people with CF. Cystic fibrosis is widely recognized as one of the best stories in medicine. CF has been transformed from a fatal childhood disease to one where the adult CF population is larger than the pediatric population. Without coverage for the complex care the disease requires, none of these advancements are possible. We urge Congress to reject these dangerous proposed policies, honor their promises to protect vital health coverage and reaffirm their commitment to the dignity and health of all Americans.
