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Tag: Medicare

People diagnosed with ALS, ESRD left with gaps in coverage

Key Points:
  • People diagnosed with ALS or ESRD are put on immediate Medicare coverage, but gaps persist
  • A senator and a representative filed legislation to address gaps, but both efforts have stalled
  • Opponents say the legislation would raise premiums, supporters say extra cost is manageable

For people diagnosed with amyotrophic lateral sclerosis (ALS) or end-stage renal disease (ESRD) before age 65, Medicare eligibility can arrive early but full financial protection often does not. 

That’s what Kevin Gallagher found when he was diagnosed with Primary Lateral Sclerosis, which is a related neurodegenerative disease. Later, the diagnosis became ALS. 

He lives in Arizona with his wife, Wendy, and they’ve been married for 36 years. She is a nurse practitioner and he trained as a paramedic and EMS instructor in Flagstaff. After he retired, Gallagher was going to teach pilots at a flight school co-owned with a friend. He had been a pilot since the 1970s. But when he got the diagnosis, he wasn’t able to fly anymore. 

When someone receives a diagnosis for ALS or end-stage renal disease, which is the last stage of chronic kidney disease, they are automatically and immediately enrolled in Medicare and supplemental insurance (commonly known as Medigap), regardless of age. However, supplemental insurance coverage that accounts for the remaining 20% of what Medicare plans don’t cover is left up to the states, Gallagher said.  

Eventually, Gallagher learned he wouldn’t be able to buy a Medigap policy because he was under 65, he said. Medicare Advantage was technically available, but it amounts to private insurance and pre-approvals, referrals and a network of doctors, Gallagher said. 

“You get a little bitter for those things and that was kind of a blow to have to get Advantage,” he said. Another surprise that came with Advantage was finding out that policies can be limited by county and zip code. “Since I lived in Maricopa and Maricopa resides in Pinal County, which has always been a mystery to me … there was not a single policy that would cover my ALS doctor and my ALS clinic.”

An ALS clinic completes several appointments in one visit every three months. A team of providers meets with the person and makes a care plan, Gallagher said.

The Arizona couple faced a choice between keeping their house, which was next door to Wendy’s elderly parents, or moving to Phoenix for better coverage.

Gallagher said he did look into neurologists available under Advantage, but none of them specialized in motor neuron or neuromuscular diseases, and one even referred him back to the doctor he had been seeing, saying he was the best in the state.

At that point, the Gallaghers were able to sell their home and rent a house in Phoenix, though it was a difficult decision, he said. Even after finding an Advantage policy, it still had a high copay because his doctor was out of their network and he put off a few treatments that were not covered, such as Botox injections that help control spasticity in his jaw to help him speak.

Once he turned 65, his insurance journey improved. Gallagher got a ventilator for nighttime use, and a respiratory therapist came to his house to show him how to use it. In contrast, Gallagher knows another person with ALS who was prescribed a ventilator, but it took a year of refusals and reapplications just to receive it. When it was granted, it was dropped off on the porch with no respiratory therapist to help, Gallagher said.

It’s a situation many people face if they’re diagnosed younger than 65, resulting in life changes for the whole family, especially when it comes to mobility, Gallagher said. 

“When you see someone that you know from your past and then see him in this situation, it’s a wake up call,” Rep. Selina Bliss, R-Prescott, said.

House Bill 2433 would require insurers to offer Medicare supplement insurance policies to people with ALS or End-Stage Renal Disease, even if they’re not 65 yet. The bill would also prohibit insurers from charging higher premium rates based on age. 

Bliss said her bill wouldn’t cost the state money. 

According to a fiscal note, the Joint Legislative Budget Committee estimated it could increase Insurance Premium Tax collections by $91,300 annually due to 1,055 individuals enrolling in Medigap plans, and potentially raising premiums. 

The bill does not affect the Arizona Health Care Cost Containment System or state employee health insurance. The Department of Insurance and Financial Institutions did not provide an estimate for fiscal impact, according to the document. 

However, there’s about 600 people with end-stage renal disease and about 170 people with ALS in Arizona, according to the organization. 

“For every new diagnosis coming in, one leaves on the other side because the life expectancy is so short,” Bliss said. 

The bill unanimously passed the House Health and Human Services Committee in February, where Bliss serves as the chair. But the bill wasn’t heard in the House Rules Committee, the last stop before the House floor. 

Sen. TJ Shope, R-Coolidge, filed Senate Bill 1191, which is similar to Bliss’ bill, but it did not get heard in the Senate Finance Committee. He said he didn’t have a bill available to file a strike-everything amendment.

Senate Finance Committee Chair Sen. J.D. Mesnard, R-Chandler, said he’s very sympathetic to the issue, but there are many other insurance bills coming through his committee for other causes. He said he did his best to play Solomon and make the best decision. 

“If we add this one, and then we add this one, and we have this … everybody pays a higher premium,” he said. “Where’s the delicate balance because we have a group of vulnerable people and then we have just the affordability of health care for everyone.”

The Arizona Chamber of Commerce and Industry and the Greater Phoenix Chamber of Commerce opposed the bill. The Arizona Chamber of Commerce declined to comment.

Mike Huckins, senior vice president of public affairs and IT operations for the Greater Phoenix Chamber of Commerce, said they generally oppose health insurance and health care mandates that can increase the cost for all employers, employees and other covered individuals. 

“While this bill is well meaning, coverage, pricing and benefits provided by private health insurance should be negotiated between employers and insurance providers,” he wrote in an email. 

Marc Osborn, who spoke on behalf of Blue Cross Blue Shield Arizona during the February committee meeting, said premiums would increase about 30%, or $70 per member per month, based on an actuarial report they conducted. 

“The reason why the cost shift is so significant is that population, the ALS population and the dialysis population will always use their full Medicare supplemental benefits, and so therefore, those costs have to be shifted onto every other post 65 (member),” he said. “While it’s a very needy and deserving population, I appreciate all that, but the cost shifts to some of the most cost-sensitive seniors.”

While 19 other states have passed similar laws, Osborn said their rates are higher and they have different market conditions. 

But Bliss said those claims are false. In a February 2026 actuarial report by Berkeley Research Group, premiums would only increase by about $2 per month. If the bill passed, about 770 Arizonans with ALS or end-stage renal disease would be enrolled for Medigap, Bliss said.

A recent study published in the American Journal of Managed Care showed that the costs were only about three times more expensive for people with ALS and six times more expensive for people with end-stage renal disease. 

Nineteen states already passed similar laws and 12 of those states “boast higher Medigap enrollment percentages than the national average,” while seven have “below average market-wide Medigap enrollment, suggesting the laws are not negatively impacting a state’s Medigap market,” according to a letter written by ALS Arizona. 

Arizona kidney patients deserve innovative cures

Javier Palomarez

America spends more than $130 billion a year — over one-quarter of the entire Medicare budget — on kidney disease. And yet, when it comes to actually saving lives, we lag behind 24 other countries, including France, Saudi Arabia, and even Iran.

That’s not just a failure of policy — it’s a moral and economic failure. And it’s one our communities know all too well.

Here in Arizona, an estimated 16,300 are living with Chronic Kidney Disease (CKD), and Hispanic patients — especially women — are among the hardest hit. Our abuelas are the heart and soul of our families. They’re more likely to progress to kidney failure, but less likely to receive a transplant. For us, access to the most effective treatment isn’t a luxury — it’s a lifeline for our communities.

The U.S. kidney care system is failing the very people it’s meant to serve. Today, more than 60% of Americans on dialysis die within five years. In Arizona, over 7,000 Medicare patients rely on dialysis. Yet Big Healthcare continues to trap patients in a costly, for-profit cycle — while prevention, innovation and access to transplants remain neglected.

Instead of fixing this broken model, Washington made it worse. Just before President Trump took office, career bureaucrats at the Centers for Medicare and Medicaid Services (CMS) quietly changed the rules — moving these medications into a government “bundle” that puts dialysis corporations in charge, instead of patients, doctors, or pharmacists.

As a result, patients can no longer get these medications filled at their local pharmacy. They must rely on dialysis clinics to decide whether or not they receive them. PLTs help patients control phosphorus levels in their blood, which is required to stay eligible for a transplant. Without access to them, patients suffer more complications, are hospitalized more often, and may be removed from transplant lists entirely.

Transplants save lives and taxpayer dollars. Every kidney transplant saves Medicare more than $65,000 per year — that’s $500,000 over a decade compared to keeping patients on dialysis. So why would CMS undermine access to the very therapies that help patients get transplants?

This rule squeezes out smaller providers and sidelines the Made-in-America biotech companies that are working to deliver next-generation treatments. Our members — many of them small manufacturers, family-run startups, and innovators — are investing millions into building better therapies. However, there’s no incentive to innovate when the system is rigged to reward the status quo.

This isn’t what leadership looks like. And our community — our patients, our workers, our small businesses — deserve better. Rural Americans living in states like Arizona are more likely to be diagnosed with kidney disease, and essential sectors like agriculture, trucking and construction report high rates of kidney failure.

This can still be fixed. CMS has proposed its 2026 rule, and once again, it fails to restore Part D access for these essential medications outside the bundle. Now is the time to speak up.

A growing coalition — including the American Society of Nephrology, Nephrologists for Equitable Kidney Care, the National Minority Quality Forum, the American Association of Kidney Patients, and the National Grange — is demanding change. We join them in calling on CMS to reverse this harmful policy and restore competition, access and innovation to kidney care.

Restricting coverage for innovative medicines threatens the care patients need most. Now is the time to strongly urge the White House and Members of Congress to acknowledge the consequences of the proposed policy change and take quick and decisive actions to expand coverage and preserve access.

Javier Palomarez is President & CEO of the United States Hispanic Business Council.

Preserving health care in Arizona

Nelson Morgan

By a one vote margin (215-214), on May 22, the MAGA Republicans in Congress passed a budget reconciliation bill that delivers to President Trump his most cherished prize: tax cuts for billionaires. To do so they have cut at least $715 billion in health care spending mostly from Medicaid; $300 billion from the Supplemental Nutrition Assistance Programs (SNAP); and, roughly $500 billion from Medicare. This is a morally corrupt and unambiguous attack on the most vulnerable in our nation, and literally trades health and health care for millions of Americans in exchange for tax breaks for a few hundred of the very richest Americans. It is far from “beautiful.” 

Deborah Howard

According to economist and former Secretary of Labor, Robert Reich, should this bill become law, the impact would be that the richest of the richest (the 0.11%) will gain roughly $390,000 a year. Conversely, it would cost about $1,000 a year for those earning less than $17,000 annually. For those earning between $17,000 and $51,000, the cost would be about $700 a year.  

Health care is a basic human right, and even our current insufficient coverage is supported by the progressive tax structure that we have had since the 1930s: the more you earn, the higher your tax rate. Regardless of your position, regardless of the balance in your bank account, the color of your skin, or your zip code, most of us can agree tax cuts for billionaires is not a policy priority. Especially when it comes at the expense of health care for the most vulnerable.

More than two million Arizonans receive health care through Arizona’s Medicaid, the Arizona Health Care Cost Containment System (AHCCCS, pronounced like “access”). AHCCCS is already at work to “cut costs” of the program by instituting additional work requirements, particularly targeting seniors between 54 and 65 years of age. 

The Arizona Mirror recently provided a sobering perspective on this from New Jersey Democratic Congressperson Frank Pallone, the ranking member on the House Energy and Commerce Committee. Referring to the 98% of Georgians eligible for Medicaid who were nonetheless unable to prove that they met the standards, Pallone said, “It’s not that they weren’t eligible, it’s that the state of Georgia put too many barriers in the way of them being able to qualify,” Pallone said. This is where Arizona is now headed: make enrollment so challenging, people who need the services simply give up.    

While it does incorporate many carveouts for vulnerable people, the Georgia experience does suggest that many sick people will end up in emergency rooms at a later stage in their illness than is safe.

You don’t have to be a policy expert to know the outcomes will include: 

  1. An increase in the uninsured. Approximately 550,000 Arizonans might lose Medicaid coverage, especially if the state cannot compensate for reduced federal funding.
  2. Increased patient morbidity. Simply put, people will be sicker than they have to be. When a patient has concerning symptoms, earlier medical care leads to better outcomes. 
  3. Stress on community health care systems. Hospitals and clinics will experience higher uncompensated care costs. 
  4. Economic Loss. For every $1 billion cut, Arizona could lose over 36,000 jobs and $3.7 billion in economic activity. 

All Americans, including all Arizonans, deserve better. Unforced errors in health policy like these will be repaired when our elected representatives prioritize the well being of our neighbors and our communities, instead of focusing on tax breaks for billionaires. 

The problem is not really one of policy differences; it is a difference of values. When we elect representatives who reflect our values, we will see legislation that seeks to provide quality, affordable health care for everyone, especially the most vulnerable, due to either low income or poor health status. 

Unfortunately, that’s not the case currently. In Washington, and here in Arizona, the legislative branches of government seemingly seek only to reduce taxes on the wealthiest Arizonans. As Paul Wellstone noted, “We all do better when we all do better.” And that’s especially true regarding personal and community health.

Deborah Howard served as a Special Assistant at the U.S. Department of Labor and worked at AARP, as well as Blue Shield of California. Howard is a candidate for the Arizona House of Representatives, LD27.

Nelson Morgan is a retired University of California at Berkeley faculty member and research scientist, and is the former director of the International Computer Science Institute. He is the author of “We Can Fix It: How to Disrupt the Impact of Big Money on Politics”, with a foreword by George Lakoff. 

Arizona should support expanding access to anti-obesity medications

Tony Rivero

As a state representative, I fight to support our most vulnerable 65+ community. We have too many of our Medicare patients struggling with diseases that could be preventable if they had access to medication. I commend Congressman David Schweikert for his leadership in addressing the obesity crisis and urge him to continue supporting expanded access to anti-obesity medications (AOMs) under Medicare. 

I call on our members of Congress to pass a bill allowing the Centers for Medicare and Medicaid Services to cover anti-obesity medicines under the Medicare program. Obesity is a severe chronic disease that affects millions of Americans, including many here in Arizona. Yet, despite its well-documented impact on health and health care costs, Medicare does not currently cover AOMs — an oversight that must be corrected.

Extending coverage for AOMs through Medicare is a bipartisan issue that will help improve health outcomes and reduce the financial burden of obesity-related conditions such as diabetes, heart disease and stroke. By investing in prevention and effective treatment, we can cut billions in long-term health care expenses, ultimately helping to reduce the national debt.

Congressman Schweikert has long been a champion of fiscal responsibility and evidence-based policy. Supporting Centers for Medicare and Medicaid Services in expanding access to AOMs is a smart, bipartisan move that aligns with public health and economic interests. I support his efforts and ask other members of Congress to take on this critical policy change to ensure Medicare beneficiaries have access to the tools they need to manage their health effectively.

Tony Rivero is a Republican member of the Arizona House of Representatives representing Peoria.

Obesity as a chronic disease – it’s time for Medicare to act

Obesity is a major health crisis in America, affecting nearly 93 million adults today and projected to reach 120 million in just five years. Our food supply, filled with harmful chemicals and additives, is a key contributor. Many of these substances are banned in other countries but remain legal in the U.S. We must take action to address this growing epidemic, particularly for Arizonans and seniors on Medicare.

Leo Biasiucci
Leo Biasiucci

As a state legislator, I recognize that tackling obesity is essential for improving individual well-being and also for reducing long-term health care costs that impact all taxpayers. Medicare must recognize obesity as a chronic disease and provide coverage for the treatments that can help those who struggle with it. Congressman David Schweikert, R-Ariz., has been a leader in raising awareness about the potential for anti-obesity medications (AOMs) to be life-changing. This is not a partisan issue — it is a public health and economic concern. Rising obesity rates drive up health care costs, place greater burdens on Medicare and reduce overall productivity.

At the state level, I have worked to improve nutrition by advocating for the removal of artificial dyes from food and limiting soda purchases through SNAP benefits. However, these efforts alone will not solve the problem. While a healthy diet and regular exercise are important, I recognize that for some Americans — especially seniors and those with mobility issues — exercise is not always an option. For these individuals, medications may be the only viable path to managing obesity.

That is why I believe Medicare must cover FDA approved anti-obesity medications. Obesity is a chronic and progressive disease that, for many, cannot be addressed through lifestyle changes alone. Studies show that expanding Medicare coverage for AOMs could save the program up to $700 billion over the next 30 years by reducing obesity related conditions such as diabetes, heart disease, and joint disorders.

Fortunately, under President Trump’s leadership, the administration has already shown support for finalizing the Centers for Medicare & Medicaid Services rule that would allow Medicare to cover these medications. With Secretary Robert F. Kennedy Jr. now leading the Department of Health and Human Services, I am confident that oversight and safety will remain priorities as these medications become more accessible.

I stand with Congressman Schweikert and others working to combat this public health crisis. It is time to take action to ensure that those who need treatment for obesity can get it. Medicare must provide coverage for anti-obesity medications — not as a replacement for healthy living but as a necessary tool for those who have no other option. The health of millions of Americans and the future stability of our health care system depend on it.

Leo Biasiucci, Lake Havasu City, is a Republican member of the Arizona House of Representatives serving Legislative District 30 and is chairman of the House Transportation Committee.

 

Prioritize senior issues, including Medicare Advantage

By 2050, an estimated 26% of Arizonans will be aged 65 and older  — a sharp rise from just 18% of our population today. Our growing older community signals that senior issues are not just a concern of the future but rather the priorities of today. 

Following this election, our leaders must be prepared to address their challenges and pass policies that enhance their quality of life. Older residents are already grappling with how to make their savings last, maintain their health, and live comfortably after years of hard work. And many of these pressures are even higher for seniors in rural communities. 

Mechelle Morgan-Flowers

As a nurse on the Navajo Reservation, I frequently work with patients residing in rural, remote areas where health care can be sparse. Such inaccessibility is particularly dangerous for older residents, many of whom require consistent and reliable health services. Fortunately, programs like Medicare Advantage improve health care utilization and access for seniors. 

Over the years, I’ve witnessed how Medicare Advantage plans act as a life-saving program for my patients. These plans offer telehealth services, prescription delivery, and transportation options, ensuring that beneficiaries who reside in even the most rural pockets of our state can access care. 

The program also addresses the rising cost of living by capping out-of-pocket expenses and maintaining low monthly premiums. This crucial health program and its affordable premiums allow our seniors to access the care they need to maintain independence in ways that fit their individual needs. 

Despite its importance for rural communities, Medicare Advantage has seen declining investment from Washington. The Centers for Medicare & Medicaid Services (CMS) have continued to scale back financial support for the program, cultivating uncertainty for seniors who rely on it. Many older adults are left wondering if the services they depend on will be available throughout their retirement. 

As CMS rolls back funding, rural communities could be disproportionately affected – many rely on transportation, telehealth lines, and delivery options. And other affordable plans just don’t provide these valuable benefits. 

With so much uncertainty around their care, seniors were looking for political candidates to take a stand. And since older residents constitute a significant voter bloc, newly-elected officials at all levels of government should recognize that protecting the population that sent them to office is critical. In the 2022 midterms, voters over the age of 50 accounted for 55% of all Arizona voters, and it appears that even more Arizonians over 50 turned out this year. 

As Arizona’s senior population continues to grow, their concerns should be front and center in policy decisions. A practical place for candidates to start is by showing their support for Medicare Advantage and providing tangible plans to address the needs of senior care. 

Seniors have built the foundation of our communities, and it’s only right that we ensure they have the resources they need to thrive in their later years. 

The path forward must include robust support for Medicare Advantage, ensuring that Arizona’s seniors can retire with peace of mind. As we all move on from the election, now is the moment for officials to commit to protecting and expanding the programs that matter most to our aging population. 

Mechelle Morgan-Flowers is a utilization review nurse on the Navajo Reservation.

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