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Floor Speech

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Mr. GRASSLEY. Mr. President, last week, I started my 46th executive year of holding meetings in each of Iowa's 99 counties. During the Q&A's in 13 southwest Iowa counties, we discussed the need to lower prescription drug costs by reining in pharmacy benefit managers, PBMs for short. We also spoke about the Working Families Tax Cut Act, which puts more money back into Iowans' pockets. For the average Iowa household, that is $2,063 of your hard-earned money back to you. I look forward to hearing directly from more Iowans throughout the year as I continue with all the meetings in each of our 99 counties.

On February the 3rd, President Trump signed into law the fiscal year 2026 funding package that included a very important priority of mine, legislation called Accelerating Kids' Access to Care Act. This law is meant to simplify the process so that kids with complex medical needs can get the specialized healthcare that they need in a timely manner.

I would like to spend a few minutes explaining the importance of this new law and how we got to this point. Kids with complex medical needs often face redtape, face delays, and face frustrations when getting their specialized medical care.

The Federal Government defines kids with complex medical needs as having a life-limiting illness, a rare pediatric disease, or one or more chronic conditions that impact multiple organ systems and reduce cognitive or physical abilities.

This can be kids with cancer, cystic fibrosis, or congenital heart disease. These kids, on average, see 5 to 6 specialists and up to as many as 20 or 30 allied health professionals. You can see, managing these types of medical needs takes patience and help because parents are often overwhelmed at the scope of that care and overwhelmed how to navigate the system to get that care for their special needs kids.

The specialized medical care for kids with complex medical needs tends to come from only a few providers, and here is the rub: often out of State at a pediatric hospital.

This requires coordination with instate and out-of-State providers and State Medicaid officials to allow this care to happen. The process to get care is difficult and full of redtape, delaying care that these kids desperately need and, in some cases, not receiving care at all.

To solve this problem, in 2018, I introduced the Accelerating Kids' Access to Care bill. Our aim was simplification of this redtape process. This law will give States the ability to use a streamlined screening and enrolling process for out-of-State specialized pediatric care providers that need to enroll in the State's Medicaid Program. We do this while also retaining safeguards to protect program integrity.

When I first started on this law in 2018 during the 115th Congress, we had eight bipartisan sponsors. In this, the 119th Congress, it garnered 46 bipartisan sponsors and became one of the most cosponsored Medicaid bills before the Finance Committee.

Over the past few years, we built support from well over 200 organizations dedicated to pediatric care. I also worked with my colleagues, including those on the Finance Committee, and I want to give a special shout-out to Chairman Crapo of the Finance Committee for his partnership in getting this law passed.

The passage of the Accelerating Kids' Access to Care Act is a win for kids with complex medical needs and also very helpful to the families that care about their children.

It is a win for kids like Charlie, a brain tumor survivor who also spoke before the Finance Committee in 2023 about the importance of this legislation.

It is a win for kids like 3-year-old Edwens from Perry, IA, whose family travels out of State so he can receive pediatric gene therapy at the M Health Fairview Hospital in Minnesota. Only a few medical centers provide this kind of care in the country for Edwens' rare disease. There are many other kids whose lives will improve because of this law.

Another person I can think of when I talk about this law is the late Katie Beckett. Katie was from Cedar Rapids, IA. She was born in 1978, and at 5 months, she contracted a brain infection that required a ventilator to breathe.

After many years in the hospital, Katie was unable to leave because Medicaid rules didn't allow her to receive care outside of the hospital, even though it was possible for her to get care at home being with family and, of course, having this treatment at home be very cost effective to the taxpayer. In the early 1980s, President Reagan heard about Katie Beckett's story, and he removed redtape for Katie through a Medicaid waiver.

I had a colleague from Iowa in the House of Representatives at that time, Congressman Tom Tauke of Iowa, who was the main mover to get the President to grant this waiver, and I will never forget Tom Tauke's hard work in this area.

Since then, Katie Beckett waivers have resulted in more than a half a million disabled kids being able to receive care at homes with their families rather than being forced into hospitals and institutions.

This law also established the Family-to-Family Health Information Centers. Today, these centers in each State are helping families and their kids navigate the complex system of services and support. This is the kind of empowerment Washington ought to promote--public policy that illuminates opportunities instead of keeping people in the dark.

In my time in the Senate, we have seen medical advancements for kids with complex medical needs, and Congress has responded by giving these kids and their families the proper medical resources. One of these resources was the Family Opportunity law that President Bush signed 20 years ago this very month. That law did several things. This, by the way, was a cooperation between this Senator from Iowa and then-Senator Kennedy of Massachusetts.

First, the legislation, the Family Opportunity Act, enabled middle- income families who have kids with disabilities to buy into Medicaid. It has helped families get the healthcare they need for their kids with disabilities without going into poverty. It was a pro-work, pro-family, and pro-taxpayer piece of legislation.

More recently in 2019, Congress passed my Advancing Care for Exceptional Kids law, or a law that goes by the short term of ACE Kids. ACE Kids better aligns Medicaid rules and payment to incentivize coordination of care. It does this by establishing a pediatric health home for kids with complex medical conditions.

Kids with complex medical conditions often see multiple doctors and dozens of healthcare professionals. You can see, that is a lot of care coordination that often doesn't happen, or it is left to the parents to figure out. ACE Kids fixes this and ensures care coordination happening.

While I am sure more work will need to be done, I want to recognize the hard work that went into the passage of the Accelerating Kids' Access to Care law and the importance of it--its bipartisanship, its backing by a couple hundred organizations that advocate for kids with special needs. Yet it is another step towards supporting the dignity of exceptional kids.

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