Summary
- Rep. Grothman highlighted his bipartisan Cancer Drug Parity Act to require equal cost-sharing for oral and IV chemotherapy in employer plans.
- Ted Okon (Executive Director, Community Oncology Alliance) said parity is only the floor and urged bans on fail-first therapy and PBM steering.
- Rep. Grothman asked Okon how PBMs interfere, and Okon said prior authorization and fail-first rules force patients off oncologist-recommended cancer drugs.
- Rep. Randall blamed Medicaid cuts, lost ACA credits, and research funding losses for higher costs while Rep. Grothman defended private markets over government-run care.
- Parity legislation would close the ERISA gap for self-funded employer plans, but Rep. Grothman conceded it likely will not pass before the election.
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Transcript
Uh I'm sorry we had a special visitor in the Republican conference today, Vice President Pence and cuz I thought it was important to listen to his whole thing, I'm here a a tad late. Um First, uh the subcommittee on health care and financial services will come to order. Without objection, the chair may declare a recess at any time. I recognize myself for the purpose of making an opening statement. Uh, and first of all, like I said, I apologize for being a little late here. I appreciate how some of you had to come quite a distance to be here, so. Um, welcome to today's hearing of the subcommittee on health care and financial services. Today we're examining why can- cancer patients in this country are forced to pay far more for chemotherapy in a pill form than the very same class of treatment delivered through an IV. Chemotherapy is one of the oldest tools we have to fight cancer. For decades it was delivered almost entirely through an IV in a hospital or a clinic. Medicine, however, has changed. The Food and Drug Administration has now approved more than fifty oral anti-cancer medication and it's estimated that between a quarter and a third of the cancer drugs in development today will be available only as a pill. For many patients, that's a breakthrough, an oral drug can be taken at home, it's less invasive, less disruptive, and just as effective as an IV infusion. For other cancers, it's the treatment the doctor prefers. In other words, it's better than an IV um with an infusion. Um, for uh um for others, it's the only option a patient has. You would think that a less invasive at-home treatment would also be easier on the patient's wallet. Right? You don't have to go to the hospital, dah-dah-dah. Unfortunately, the opposite is true. And the reason has nothing to do with medicine. It has everything to do with how the drug is built. When chemotherapy is delivered through an IV, it's covered under a health plan's medical benefit. The patient usually pays a modest copay, and they're out of pocket. costs are capped for the year. When the exact same chemotherapy comes through as a pill, it gets thrown onto the pharmacy benefits specialty tier. In other words, a flat copay i- instead of a flat copay, the patient pays coinsurance, a percentage of the drug's price, and in the commercial market, that bill often has no cap at all. One in ten patients prescribed an oral cancer drug face a copay of two thousand dollars or more just to fill their very first prescription. Unsurprisingly, about one in ten patients never pick up their medication at all. Think about that, they got cancer and one in ten times I I didn't know I'm gonna pick it up. Uh, a cancer patient walks into a pharmacy holding a prescription that could save their life only to leave empty-handed because they cannot afford it. So who profits from in essence letting these people die. The answer far too often is the middlemen, the pharmacy, benefit managers, or PVMs. The three largest of these companies are also owned by the nation's largest health insurers. Okay, they decide which drugs a plan will cover, the set which the patient pays, and they collect rebates calculated as a percentage of the drug's list prices. federal trade commission has found that the largest p b m s marked up specialty drugs, including oral cancer drugs, by hundreds and even thousands of percent when they were dispensed through the pharmacies, these same companies own, pocketing billions of dollars in the process. In other words, a way to make more money uh not to do what's best in the patient's uh own interest uh and i think um the system as a whole doesn't save any money and when they're not marking up the price they're delaying the care through prior authorization through fail first step therapy and forcing patients to fill their prescriptions through these same company owned pharmacies right if you just give them the drug in the first place save a little money but even more save lives And when they're not marking up the price, they're delaying the care, um. Forty-three states have passed laws to fix this, including my own state of Wisconsin, requiring that oral and IV chemotherapy may be treated the same. But those state laws cannot reach employer plans that cover most working Americans because federal law preempts what the state legislatures are doing only Congress can close that gap. That's why I personally have introduced the Cancer Drug Priority Act, which is bipartisan with a straightforward pro- premise. A health care plan cannot charge a patient more for oral cancer than for IV treatment it's already covering. This hearing will highlight how the problem took root, how middlemen are harming patients, and which Congress has to do to improve the lives of cancer patients across the nation, and increase the chance that you will live through cancer. We are honored to have ecter expert witnesses here with us today to help examine this uh crucial issue. With that I yield to uh you don't look like member of Krista Morthy.
Mm.
Uh with that I yield to Congresswoman Randall for your opening remarks.
Thank you, Chair Grothman. Um, appreciate finally having a hearing again in this subcommittee. It's been nine months since we've gotten together, nine months since the majority has chosen across many committees uh to hold bipartisan or to hold partisan round tables instead of hearings so it's great to be back in this room for a hearing. I'm pleased to be filling in for a um as the ranking member today and to discuss the ways that healthcare has become unaffordable and inaccessible. Rising healthcare costs are a constant concern for me, as they are for so many millions of Americans. Daily life is increasingly unaffordable, and the cost of health care is a huge driver. Choosing between health care and other essentials like food, rent, child care is keeping Americans up at night. And I know that government can help. My younger sister, Olivia, was born with complex disabilities, and because of Medicaid expansion, my family was able to keep our home and afford her care, and she was able to live a thriving life for nineteen years. Every family should have the ability to care for their loved ones. No one should have to worry about how or even if they can afford health care. We should be working to bring down the costs and bring down health care prices and improve access to care so that quality care is available to all, including those in rural communities like mine. The cost of health care can haunt families for years, and many Americans struggle to survive the crushing weight of medical debt. Because of soaring health care costs, medical debt is an issue that disproportionately impacts, people of color, women, families, and those without insurance. Addressing these disparities is absolutely vital if we are to have a health care system that is affordable, accessible, and improves outcomes for Americans, regardless of where they live or how much money they have. And the high cost of medication is a big part of the problem, including oral chemotherapy. In one recent survey, almost half of the respondents reported being underinsured for prescription medications. Even with insurance coverage, they could not afford all the medications they need. This should concern all of us, and I was so grateful to hear um the chairman out lay out some of the problem, with oral chemo especially. The Trump administration and my Republican colleagues, however, have only made the problem worse over these last two years. Policies that are making healthcare coverage more expensive have been passed by this majority and they have significantly cut funding to vital medical resources and programs across the country. The Republicans' so-called Big Beautiful Bill Act cut Medicaid, stripping millions of their health care coverage. Then congressional Republicans refused to extend the ACA tax credits that helped people afford their insurance premiums. These unconscionable actions only led to skyrocketing health care premiums and out-of-pocket costs for families across the country. In effect, Republicans in Washington have traded your health care for tax breaks for billionaires. Under Republican leadership, up to ten million people are estimated to have already lost their health care coverage. This means an additional ten million people struggling to see a doctor or pay for a prescription. They have created an environment where yet another person and another family are forced to choose between their health or rent. And that's not all. The Trump administration also canceled a hundred and sixty million dollars in funding for Washington state that was meant to support disease monitoring and vaccine programs and these cuts also make Americans less safe and risk their health at the same time the congressional republicans are making healthcare more expensive and harder to access the trump administration is also destroying the research and innovation we rely on to cure diseases like oral cancer improve treatments, and advance healthcare The administration has terminated, suspended, or otherwise disrupted thousands of grants resulting in a loss or disruption of over sixteen billion dollars in scientific research. These cuts have caused a major disruption in our nation's scientific research engines and are costing lives. This hits particularly close to home cancer patients from across the Olympic Peninsula and across the country traveled to receive treatment from the Fred Hutchinson Cancer Research Center in Seattle. a world-class research institution that has been affected by federal funding cuts and staff reductions. Cutting cancer research is evil, full stop. This administration has robbed our society of new treatments and cures, and cancer patients and their loved ones will suffer. Early career researchers are now choosing different research paths because of the instability that President Trump has created. Cancer patients and others are facing terrible and deadly diseases and are suffering more after promising clinical trials have been canceled. Costs are rising every day. And the Trump administration is only making things harder, and more expensive, for American families. The Republican majority in Congress could have done more to stop it, but has enabled President Trump in ripping off the American people. I'm glad that we're holding a hearing today. The high cost of oral chemotherapy needs fixing. And it sounds like we're aligned on some of those issues, but that's just one piece of our health care challenges. Countless medications are out of reach for far too many families. This is the fir- first hearing on high drug costs in this subcommittee, and it's the last hearing this committee will hold before Americans go to the polls to elect a new Congress. We should remember that this is far too little and far too late. Thank you. I yield back.
Okay, um. I don't exactly wanna respond to that, but I will say this. Uh, this hearing is focus focus focused on oral chemo. We know there are people who feel it will be better if the government took over the entire health care system. That doesn't work anywhere else that I'm aware of. There's been tons of fraud and more fraud will be soon uh shown uh in the current Medicaid system, um, saving billions of dollars. Uh, and I, I am gonna from here on out just say that, you know, having the government run anything doesn't seem to work very well. It's why our country is so much wealthier than other countries. Uh, and we will continue to try to work to improve the current system. But right now, we're gonna focus on community oncology. I'd like to welcome today's witnesses. Uh, Mister Ted Oaken serves as Executive Director for the Community Oncology Alliance. Mister Oken is a nationally recognized expert on the policy and politics of cancer care with an expertise in cost of cancer treatments, health care reforms, pharmacy benefit managers, or PBMs, and the changing landscape of cancer care delivery in the United States. Then we have Doctor Sh- uh, Sheetal Kirchner Kirchner, a practicing oncologist and associate pr- professor of medicine at Northwestern. Medicine, Doctor Kircher also serves as the Clinical Practice Director and Medical Director of the Cancer Survivorship Institute of Northwestern's Robert H. Lurie Comprehensive Cancer Center. In this role, Doctor Kircher oversees a program spanning clinical survivorship care and research in long-term effects of cancer treatment. And finally, Doctor Anthony Wright, Executive Director of Families USA, a national health care consumer advocacy organization. Before joining Families USA, Spend twenty-two years as Executive Director of Health Access America. Thank you all for joining us, and I'm gonna look forward to your testimony. Now, pursuant to com- uh com- oh, by the way, I also want to, uh, submit for the record, um, a statement from the International Myeloma Foundation. I have currently a l- very loved family member who has myeloma. Um, we have a statement from the cancer support community. We wanna submit for the record and a statement from the record from Susan G. Coleman on unequal treatment, addressing the drivers of unaffordability of oral oral chemotherapy. Now, pursuant to community rule nine G, the witnesses will please stand and raise your right hand. We solemnly swear to affirm that the testimony that you are about to give us is the truth the whole truth and nothing but the truth, so help you God. Let the record show that all the witnesses answered in the affirmative. Thank you. You may now take a seat. And um we'll first call on Mister Oppen.
Thank you, Chairman Grothman, Acting Ranking Member Randall. And members of the committee, thank you for the opportunity to testify today. I'm the Executive Director of the Community and College Alliance, a non-profit organization advocating for cancer patients and the independent providing the highest quality and most affordable cancer care close to home. I want to begin with a core principle. A cancer patient should not pay more for their cancer drugs simply because the medicine that may save or extend their life comes in a pill, rather than an IV bag. Yet that happens today. Cancer treatments change dramatically. Roughly one-third of cancer therapies today are oral, and that share continues to grow. But because oral cancer drugs are generally covered under the pharmacy benefit, while infused or injectable drugs are covered under the medical benefit, patients can face very different and sometimes higher out-of-pocket costs, simply because of how their cancer medicine is administered. That makes absolutely no sense. COAS supports the goal of Cancer Drug Parity Act H R forty-one O one, which requires employer-sponsored health plans to provide cost sharing oral cancer drugs that is no less favorable than cost sharing for cancer drugs administered by a health care provider. Importantly, the legislation also prevents plans from achieving so-called parity by simply increasing what patients pay for infused cancer drugs. Congress must past that protection. But I strongly urge Congress to view parity as only the beginning of the discussion, not the end. Parity is just the floor. Access and affordability are the goal. If a patient pays thousands of dollars for a medically necessary cancer drug, it offers little comfort that the coinsurance is technically equal to another benefit. Our collective goal should be to minimize the financial burden on patients receiving potentially life-saving cancer treatment. And there is another equally important problem with potentially life-saving cancer drugs. A cancer drug that a patient cannot actually obtain is no more accessible than a cancer drug that the patient cannot afford. Today, insurers and their pharmacy benefit managers place obstacle after obstacle between patients with cancer and the medications prescribed by their oncologist. Prior authorization all too often delays treatment. Fail first Step therapy can require a patient to try and fail a plan preferred drug before receiving the therapy the treating oncologist believes is optimal. Restrictive formularies often exclude drugs or place them on unfavorable tiers. Patients can be forced into insure PBM specialty and mail-order pharmacies rather than receiving their medications directly from the oncology practice, coordinating their care. And patients successfully receiving a treatment can face non-medical switching simply because the insurer or the PBM changes its formulary. Koa's twenty twenty-six survey of community oncology practices found that more than ninety-six percent of respondents had observed patients with cancer struggling as a direct result of insurer-imposed therapy. The same percentage was pro- reported that insurance policies interfere with patients receiving the treatment their physician recommends first. For patients with cancer, the concept of fail first is not only disturbing, but it's scary and devastating. Cancer is a disease where you effectively lose control of your body. You shouldn't lose control of the medication to save your life. A drug preferred on an insurer or PBM formulary is not necessarily the least expensive drug for the patient, but the drug the oncologist believes is best. It is often the drug that generates the greatest rebate or financial return for the middleman. Cancer treatment decisions should be made based on the patient's diagnosis, biomarkers, prior therapy, comorbidities, expected toxicity, and the best clinical evidence. They should not be driven by what drug generates the greatest financial return for the PBM or the insurer. Congress should build on HR forty-one O one and other legislation intended to remove the cost delays and denials that prevent cancer patients from receiving their optimal cancer treatment. Congress should minimize percentage-based coinsurance for medically necessary cancer drugs. Inappropriate fail-first-step therapy and non-medical switching should be prohibited. Prior authorization should be dramatically streamlined with enforceable deadlines, meaningful exceptions, and review by physicians with real oncology expertise. And insurers and PBMs must be stopped from steering cancer patients affiliated mail-order and specialty pharmacies simply because the most profitable to the middlemen the corporate middlemen. Let me close with this. Cost parity is the floor. Access and affordability are the goal because parity without access and affordability is not really parity. Cancer patients should not have to fight their cancer, fight unaffordable cost sharing, and then fight an insurance company or PBM simply to receive the medicine their doctor prescribed. Congress can and must change that. Thank you and I look forward to your questions.
Thank you. Uh, now we'll call on Doctor Kircher for your statement.
Chairman Grothman, Ranking Member Randall, and members of the subcommittee, thank you for the opportunity to testify. My name is Doctor Sheetal Kircher. I'm a medical oncologist at Northwestern in Chicago, where I treat patients with gastrointestinal cancers. I'm here today because my patients are not only dealing with their cancer diagnosis, but they're trying to figure out how they're gonna afford the drugs that I'm prescribing them. Cancer treatment has changed dramatically. When people think about uh those receiving chemotherapy, they often imagine a person in an infusion center receiving an IV, but increasingly some of our most effective drugs are pills taken at home. And sometimes this pill isn't just an alternative, convenient um Switch. It it's sometimes the best treatment or the only treatment that is appropriate for that patient. And our insurance system has just not kept up pace with that science. An IV drug, like we've all mentioned, covered under our medical benefits, and oral drugs covered under the pharmacy benefits. This is not just a technicality of insurance design. To a patient with cancer, it determines whether they actually get their treatment. And so this is what it looks like in my clinic. On Wednesday, August twenty-six, I was walking down the hall of my clinic to see Susan, sixty-two year old uh school teacher. She was a wife, grandmother, um had about eight grandkids and also has metastatic pancreatic cancer. I was holding the printout of her scans walking into that room, and that scans, they showed that her cancer was growing despite the IB chemotherapy I was given. After seventeen years of doing this work, I still have to pause when I walk in into those rooms. I take a deep breath, knowing that the words are going to take away some of her hope and force them to once again confront her mortality. And literally, as I'm walking into that room, I step in, I receive a notification on my phone from the - and it's an FDA has just approved Durexoracib, a new treatment for metastatic pancreatic cancer. And for a few minutes, that room was purely filled with hope that there was something that was gonna give Susan just a little bit more time. That hope is quickly followed by a reality I knew was coming, that prescribing the drug and getting the drug are two different things. With her IV chemo, my infusion center, obt- obtain authorization, patient shows up for chemotherapy, we administer the treatment, and it goes through her medical benefits. Um, the experience is completely different for a patient receiving oral drugs. With IV, the patient may absolutely have copays and and co-insurances and those costs can be significant but most have a supplement coverage or an employer-based uh plan design that limits the amount they pay at the point of treatment the patient is not standing at our infusion center door being told before we hang your bag of chemotherapy you need to pay a thousand dollars and for oral drugs that experience is is really quite different uh the specialty pharmacy processes determines the out-of-pocket responsibility, which can be substantially higher than the medical benefit. That cost becomes apparent before the drug is dispensed. Too often our health system specialty pharmacy is out of network, even at a large institution. Forcing the prescription to a PBM-owned pharmacy, separating the dispensing of these expensive, toxic drugs, and really divorcing them from the oncology team, which is providing the education and the care to the patient. And the patient can essentially receive a phone call saying, we have your cancer medication, your responsibility is a thousand dollars, how would you like to pay for that before we ship it? If they can't afford that amount, the drug is not dispensed and we are left trying to find another way to pay for it. And we know this cost matters. In a study of over a thousand ten thousand patients prescribed these drugs, if the out-of-pocket cost was over five hundred dollars, they were four times more likely to abandon the drug. than if it was a hundred dollars or less. And in oncology, a prescription that a patient can't afford is not a treatment. IVs also mean transportation, parking, waiting rooms, hours in infusion centers, not for the patient alone, but also for their loved ones. And oral drugs face additional obstacles. They require prior authorizations, formularies, step therapy changes, and and really require to go through other particular PBM often owned specialty pharmacies. The amount of time my nurses and advanced uh practice providers spend doing this, in in addition to myself, is is extraordinary when this is time we should be spending with our patients. And I understand that the Cancer Drug Parity Act doesn't solve all these problems. It doesn't eliminate prior authorizations and it doesn't solve our PBM issues, but it does fix something very specific that has never made sense to me clinically. As an oncologist, I tru- I choose treatment based on biology, science, science, expected benefits, toxicities, and what matters to that person sitting right in front of me. Sometimes it comes through an IV and sometimes it's oral. On August twenty-six, Susan did not choose whether her breakthrough was gonna be developed as an infusion or a pill. She should not experience a completely fi- different financial reality because her next treatment is in is swallowed instead of infused. Uh, that's why the cancer drug parity mac- uh, parity act matters to me, uh, the science to determine the treatment. Thank you.
OK. Thank you. Um, Mister Wright, I guess like the others, we'll give you five and a half minutes.
Right. Thank you, uh, Chairman Grothman, Representative Randall and members of this subcommittee. Thank you for having me uh here on behalf of Families USA, the national nonpartisan healthcare consumer advocacy organization. We appreciate the committee's interest in addressing the drivers of the unaffordability of cancer treatments and ensuring that oral chemotherapy is appropriately covered. Cancer impacts millions of American families. More than two million cancer cases will be diagnosed this year alone, including my wife, just a few weeks ago. As I and millions more know personally, a cancer diagnosis is frightening enough on its own. No family should have to fight a second battle. over how to afford the treatment. Even for people with private coverage, the cost of anti-cancer drugs can be staggering. Take Keaton Herzer, a thirty-four year old from Colorado who was diagnosed with rare bile duct cancer. The day before his infusion of a targeted therapy, his health plan denied coverage, despite his oncologist's recommendation and advocacy. Rather than delay uh what could uh jeopardize his shot at a much needed liver transplant, Keaton and his wife emptied their savings account and paid for it out of pocket. Seventy seven thousand dollars for a single treatment. Take Jen Jobe, a Texas teacher who beat stage four colon cancer, and is now saddled with major medical debt. The cost of a single t- chemotherapy treatment was enough to reach her eighty-five hundred dollar annual out of pocket maximum. Over the course of treatment, she racked up forty thousand dollars in out of pocket costs despite her employer's on-the-job benefit. These stories illustrate the big cost of cancer care, the need to be covered, and for that coverage to be comprehensive, without delays, denials, sky-high deductibles, or other cost barriers. Health plans certainly need more oversight, especially of benefit designs developed in corporate boardrooms without public input, as they seek to minimize their risk and shift the cost onto the consumer. Congress should follow the lead of state marketplaces that set standardized plans, to ensure essential benefits and fair and value-based cost sharing. More than half the states have also passed co- passed co-pay caps for prescription drugs with eight that have specific caps for specialty drugs, like ok- oral chemotherapy. Similarly, forty-three states have passed parity laws so cancer patients don't face different financial barriers for IV administered treatments versus oral chemotherapy often covered in a separate drug benefit with its own deductible specialty tiers, coinsurance, and other cost sharing. We support the Chairman's bipartisan Cancer Drug Parity Act, which covers federally regulated employer plans that states can't touch, and other efforts to ensure that all coverage is comprehensive and cost sharing is limited. Yet cancer patients with non-employer plans also need comprehensive coverage. Yet ten million Americans are projected to lose coverage because Congress's cuts to Medicaid and the Affordable Care Act. Just this year, four million Americans dropped their individual coverage due to the doubling of premiums resulting from the deliberate decisions to end the enhanced tax credits. A few million more dropped down to bronze plans with deductibles of seven thousand dollars or more. We urge this committee to consider the millions of newly uninsured and underinsured including those who will inevitably become cancer patients, and face the full cost of cancer care. For all consumers, regardless of how or whether they are covered, we must confront the inflated and irrational prices of prescription drugs. Nearly one in three adults report not taking their medication to its prescribed rationing skipping doses not filling their prescriptions at all an estimated a hundred and twenty-five thousand people die each year as a result drug companies have long exploited a system that lets them set a high launch price with no accountability and then raise prices faster than inflation. Thankfully, Medicare drug price negotiation and a new two thousand dollar out-of-pocket c- cap is starting to lower drug costs for millions of seniors and people with disabilities. But the inflation reduction to ax- negotiating power is limited to Medicare. We must expand negotiation to more drugs and to more people, including with commercial coverage. Congress must also shut down problematic pricing and practices like pack and gaming, and pay for delayed tactics that keep cheaper, generics, and biosimilars out of the market. In closing, Americans are urging action on prescription drug prices and health care costs in general. Our Families USA poll last month showed that ninety-four percent of voters said it is important to Congress and the President act on health care costs. Seventy-four percent said very important. They want Congress to address affordability and hold the health industry accountable from the drug companies to the health plans, to the providers, to the PBMs. Cancer patients like Keaton and Jen deserve more than parity between two unaffordable treatment options. they deserve a system where the cost of staying alive also doesn't threaten their family's financial future. Thank you, and I look forward to your questions.
Okay. I'd like to thank you all very much. Um, now we're going to the ans- uh question and answer. By the way, it was Um, I also wanna give a little shout-out before we We start as far as the overall cost of drugs. I know it's, you know, drug by drug, but Trump R X is the first time in the twelve years that I've been here, that we really had somebody willing to stand up to the pharmaceutical industry and drop the price of drugs. And while that's not gonna be as comprehensive as what we're gonna talk about today, it was a a a great step and I'd like to thank the president for that. Okay, now we'll start the questions. Um. I recognize myself for five minutes. Um. Here. Uh, medicine has changed. More and more cancer is being treated with oral medication that patients take at home rather than through IV infusions. For many patients, oral chemo is the safer, easier, and more effective uh option. But the way these drugs are paid for has not kept pace with the change. I'd like to ask both Mister Ocon and Doctor Kircher Can you explain and play in terms how our insurance rules have failed to keep up with the science and who ends up paying the price for this failure? OK.
So I think the the uh uh, Mister Chairman, part of the problem is you identified in your your remarks that the PBMs, basically three PBMs control eighty percent of the prescription drug market. You have to realize each one of those PBMs is owned by an insurance company. Uh, in fact, in some cases the insurance company owns the physicians as well too, with United Healthcare. So the problem is that as these companies have seen these oral cancer drugs, and and upwards of thirty percent, we're going on forty percent of cancers are treated with oral cancer drugs, you have to realize that they are gold to these PBMs. They are gold especially when they can extract rebates and do other mechanisms to make off of these drugs and they always push the highest the highest priced drugs. So the fact of the matter is that that this has attracted them to a market that is just gonna increase and it's just gonna get worse.
Yeah, I agree, and you know, I think the cancer, in cancer specifically, the drugs have changed so much over the last twenty, thirty years where we did used to only have IV chemotherapy. And even in the, in the fifteen years that I've been practicing, the science has evolved into a, in a space where not only orals, we're talking about the next level of now we're gonna have, you know, a lot more immunotherapy, CAR-T therapy, different type of infusions that we'll need to keep up with this antiquated way that we really finance the chemotherapy, locking us into um a bucket that really doesn't make sense for oncology anymore.
OK. Um, the medical providers that are members of the Community Oncology Alliance, or COA, treat most of the patient, uh, the cancer patients in our country. As COA's Executive Director, you've spent years fighting the industry practices that get between patients and their prescribers. Could you explain to us how PBMs and insurers often interfere with a patient's prescribed oral chemo treatment?
It it is it is terrible. First of all, when the drug is prescribed, if the insurer or the PBM with prior authorization does not agree with that, then the oncologist basically has to make a switch. Or in some cases, the insurer will basically say, you have to fail first on this drug, and in some cases a couple times you have to fail. Think about a bad cancer patient and someone says you have to fail on that drug, meaning your cancer is growing. before you basically get the drug that they want. And again, I go back to the the issue here, when you have three entities that control eighty percent of the prescription drug market they are in a leveraged position to extract rebates, and therefore they look for the most expensive drugs, the most the drugs that they can profit the most from, as the drugs that they want the patient to get, not what the oncologist wants. So it is a it is a growing problem, especially as we have more oral drugs. Why didn't we see this ten years ago? Cuz we didn't have the oral drugs that we have now. It's just gonna get worse, and it's gonna get worse until we do something about these PBMs and insurers.
Thank you. We we've dealt with the PBMs in other uh hearings. Doctor Kircher, for some cancers an oral drug isn't just more convenient, it's the treatment that works best, and it's the only option a a patient has. When a plan makes this option unaffordable but covers the IV jug cheaply cheaply, are we forcing patients towards a more dangerous alternative? And does the doctor, who ultimately, you know, is your you're relying on, do they know what's going on?
Thank you for that question. And I think that's a misconception that that they're that these drugs are alternatives. They're actually completely unique identity, you know, identifiable drugs, where I as a physician am not making a choice. I don't have a choice oftentimes for an IV alternative. So there are times absolutely where I cannot get my oral drug quick enough, fast enough, and I will need to start patients on IV therapy cuz I can get it approved quicker. I absolutely agree with your question that, yes, that oftentimes does put patients in a toxicity space that I would rather not them being in and i'm doing it mainly based on the fact that i need to treat their cancer quickly
thank you um ok we've taken that time miss randall
thank you mr. chair and thank you again to our witnesses for being here today um as i mentioned at the start last year hr one was the beginning of stripping health coverage away from fifteen million Americans. Rural hospitals, nursing homes and community health centers who often are providing important, life-saving health care to cancer patients are under severe strain, forcing many to reduce services or close them altogether. Um, many rural hospitals are choosing whether or not they can continue offering oncology and cancer services or if their patients are going to travel hours farther. to go to another treatment center that still provides that care. Pregnant women being forced to travel greater distances to access maternity care, seniors struggling to find long-term care, people with disabilities experiencing serious disruption to essential services. Sarah in Tacoma, Washington, wrote to me that she is a breast cancer survivor who was diagnosed with an aggressive form of the disease just before her forty- forty-first birthday. She credits decades of federally supported research with helping make her survival possible. And now, at forty-four, and two years past active treatment, she continues to live with the fear of recurrence while watching for the next breakthrough. Her story is a reminder that research breakthroughs become lifesaving treatment, and Congress must protect federal investments in cancer research and ensure that these treatments are affordable and accessible. In the richest country in the world, as the chair pointed out earlier uh that we are, it is unacceptable that we allow high out of pocket costs to stand between patients and the advances that research makes possible. Mister Wright, my question is for you. Oral chemotherapy can be particularly difficult to access for patients in underserved communities, where lower incomes, gaps in insurance coverage, limited access to oncology care, other barriers can compound and burden the high out of pocket What do you see affecting most patients in rural, low income, and other underserved communities in preventing them from getting access to care?
Obviously the issues of uh of access in rural health care rural health care is significant already. We do see, as you mentioned, that the cuts um that were made last year, the biggest cuts in the history of the Medicaid program, will make that issue worse, especially for providers where Medicaid is the primary payer. And that includes rural hospitals, that includes maternity wards, that includes community clinics, and a range of other providers that will have to either scale back services or maybe even close as a result. Um, I also, uh, think that these cuts have an impact both on moving people off of coverage, again estimated millions of people who will face the full face- uh, full force of cancer costs if they - if they do get cancer while uninsured or underinsured um and even if they are insured, they'll have a harder time getting access to the care that they need. Um, and even t- e- even trying to get through some of these bureaucratic bu- burdens, you have a situation where the Trump administration has gone further than the, uh, than the l- the law that was passed by saying that, yes, we're gonna exempt people who are medically frail from these requirements, but we're gonna actually have to have everybody go get a doctor's note. We're not gonna blanket say folks with cancer have this, and we're gonna put additional bureaucratic burdens even for cancer patients, to to get the care that they need.
Thank you so much for that perspective. As we know, the cost of health care can lead many to putting off much needed care. And it's not a red state versus blue state issue, right? I I represent Washington state, but these huge cuts affect everyone. Texas hospitals are facing a roughly nine point eight billion dollar loss in additional Medicaid funding this fiscal year, about twenty-seven million a day funding that helps hospitals cover the gap between Medicaid payments and the actual cost of caring for patients who need, often, expensive treatment. Mister Wright, you, um, shared so much about the patient experience with us. For oral chemotherapy in particular, how much of the financial burden patients face today is driven by the underlying price of the drug itself versus the way it ensures uh structure coverage?
I I think it's both. I think it's uh I think the drugs are very expensive and again we give them a monopoly, but in many cases they they abuse that abuse that monopoly, that patent with gaming to try to extend that monopoly to uh have more time to charge the monopoly price. And then the insurers um pass that cost on to consumers um and try to try to limit their risk with the types of benefit designs. And that's why we need to have oversight over benefit designs. Cancer parity is one example, but there's other ways to put caps or other ways to make sure that we have standardized plans so people have assurance that essential benefits are covered and they can do apples to apples comparisons.
OK.
Can I uh just uh
Uh, well, uh, uh, uh, uh, OK,
For unanimous consent.
sure.
I'm done with my questioning, thank you. Um, I asked for unanimous consent to enter into the record an article from The Guardian, which shows how Trump Rx is not a solution for the majority of patients dealing with high drug prices and also for unanimous consent to enter into the record a report from the protect our from protect our care which found that the trump administration's actions threatened the closure of over twelve hundred hospitals clinics um and nursing homes jeopardizing access to care
OK uh without objection um I will say right now uh we'll see how many more people show up for this subcommittee but we are gonna have two rounds of questioning so if you wanna hang around and now we go to the great Paul Gossard.
Well, as you both all you may not know, I was a dentist for twenty-five years, okay. So I was looking at marketplaces. So, uh, Mister Wright, I am gonna ask you this question. How has the patent process really affected this? Because it once upon a time used to be first to discover instead of first to file.
A- again, I think we have a a drug development process that inclui- it where those who, um, filed a patent get the the benefit of a several years of a of charging monopoly price i do think that the opportunity for congress is to take a look at ways that that patent has been gamed um whether from patent gaming trying to extend the patent pay for delay settlements where they actually do settlements to the potential generic competitor to keep competition from the market
i think it's a preliminary force and we have to go back to her address because there was a a law called McCarran-Ferguson gave limited liability to insurers uh for that monopoly rule but they were running a freight train through that thing it was my legislation that repealed that now I think we ought to be looking back at that one do you agree
I'll happy to take a look at it
great great great um so um what if I told you that part of this is the federal government's problem uh Mr. O'Connor so back in two thousand seven we knew that in cancer drugs that the IL fifteen was a marker that actually exposed the tumor and then you could use your uh your own uh uh genetics and your immune system to kill it off that was done in two thousand seven why don't we have this that that because we see now Ktruda as being a as a K two or as a I one A two I two drug it doesn't do that and yet uh uh Antiva is one that exposes those those tumors unless your your body's This has been known to two thousand seven, the FDA. What is the problem? Why isn't this being directed and why is it so expensive?
I can't really, I can't really explain that, Congressman, I mean the the fact of the matter is that that in the um and and Doctor Kircher could talk about this is we have more
I'll come back to her.
uh we have more drugs and more novel drugs, she talked about CAR-T. and talked about uh not just the immuno uh agents that we see in terms of catruda and opdivo but we're seeing cellular therapies come out that are using the uh the body's own mechanism to heal and i think that basically you're gonna see a lot more of this and they're very novel and how we pay for those and the mechanism has to be looked at as well too cause it's not just as the chairman said going from you know injectable chemotherapy that you think of traditionally to oral drugs it's now cellular therapies and different things and we have a payment mechanism that is archaic and not keeping pace.
i'm glad you said that because you know bringing in the ranking members comments i agree with her you know a lady with breast cancer, why she wasn't given the braxin i don't know. You know it's it's criminal what's going on here, absolutely criminal what's going on here. So you know i think that uh i think we gotta start from the very bottom. increase the competition so that nobody can look, not don't allow any limited liability for the insurance companies, make them compete, make them compete. And we're so far behind. There's there's thirty four countries, thirty five countries I believe now, that they have the exemption to uh to uh insurers that they have a a Braxen and then you have this Keytruda. Doc, what do you see in your prac practice?
I mean really just echoing um the sentiment up here is that we need innovation in cancer treatment. We need these types of treatments to move forward, and they are expensive, and they take a lot of research and development. So, you know, comprehensive health care reform and and price reform, drug parity is just one piece of this very complicated puzzle. Knowing that stifling innovation is not what our cancer patients need, um, But leaving behind a a legacy of financial devastation also cannot be. And how do we find uh the middle ground?
Eh exactly. I won't come back to that, we wanna talk about you know uh the opportunity for the right to try. Why isn't it getting the vestige that it should be? Because I think there's a lot more to the story than meets the eye. I'll yield back and I'll look forward to the second round.
um i asked unanimous consent for a second round of questions for the members without objection so ordered you're not objecting are you
not objecting
oh ok
mmm
ok um we'll go um first of all make a a point outside of this um we may or may not have other people show up with for the subcommittee uh i'll make a point that we should do something about subcommittee attendance later on uh ok um
well i'll tell you i i enjoyed this because i got numbers of requests today so
i know
i'll take that right now
all the more importance for the people who do shop forty three states uh d uh mister oakland this is for you forty three states and the district of columbia have already passed oral par oral parity laws uh i believe i voted for such a law when i was in the state legislature in wisconsin but those state laws do not reach self funded employer plans so those states do not um So those state laws do not reach self-funded employer plans which cover roughly two-thirds of Americans. So, you know, if you're sitting back home and you hear this, you thought, wait, my s- I thought my state took care of it, not if you're part of a a self-funded employer plan. The Cancer Drug Parity Act, which I reintroduced as Congress, closes the employer plan gap by amending ERISA, so a plan covering IV c- anti-cancer drugs must offer cost sharing for medically necessary oral anti-cancer drugs on terms no less favorable than the IV alternative. in practical terms what changes would a patient at the pharmacy counter see if this bill becomes law
well i think the i think the beauty of it is mister chairman is that now on a federal level you basically have parity for those self-funded plans so it takes it it fills in the gap that you have with those forty three states that is just on the state law so i i think it's a absolute step in the right direction i think what we need to build on it as i said uh, and Doctor Kirchherst said as as well too, is we need to build on it in terms of having no prior authorization and no fail first step therapy as well too. But everything we do, we have to understand, everything that Congress does here is a step in the right direction in terms of PBMs and insurers and certainly oral cancer parity.
OK, Do- Doctor Kirchherst, I'm gonna ask you this. Obviously the current system is broken and that we have people dying unnecessarily because they can't get the drugs they have. Um, the question is who exactly, cuz overall this should be, I would think, cheaper overall, right? Because you're not going through this first step sorta nonsense in which somebody i- i- is paying the cost there. Uh, who is making the money off the current system at the expense of the patient? PBMs, drug companies, who who is making the money?
I think the answer to that question is yes, all of those,
Oh.
um, at the expense of the patient. Um, and so, I think at every step in that chain that you just mentioned, that there's inefficiencies and and unlikely abuse, um, you know, ultimately, I know that what I'm seeing at the patient level and at the physician level is where things are suffering. And that's where it matters the most. Um, you know, people are definitely not paying me more to handle these prior authorizations. And answer the phone call from the patient and the the the numerous messages in the portal I receive of when is my authorization gonna go through and me not having an answer for them.
Okay, now there's obviously a lot of cost that goes into the current system. So common sense would say that overall, um, if this bill passes, it will be cheaper overall, right? If you could immediately go to the oral drug right off the bat.
I wouldn't assume that necessarily oral drugs are cheaper or m- or less cheap than IV drugs. Sometimes IV drugs are more expensive. It just puts them on. This this legislation is excellent because it puts them on par with each other. So at least there's some transparency in how we are um
and i yeah i guess i'm trying to get to this legislation is not law today
are covering
and it's not law somebody would have introduced something in past sessions except for somebody's making money so the question for you really is who's making the money you you can say who who is who is making money on the current
good question
system that would stand in the way of this bill becoming a law
i think p b m s um in in yeah And and all the middlemen in between.
Okay, uh, Doctor Okun, I can see I can see you wanting to say something.
Excuse me, but when my wife lis- listens to this and she hears me call, you called me doctor, and she's the nurse, she will say there's only one medical professional in the Okun family and it's not him as much as he thinks he knows about oncology. So I I appreciate your reference to the doctor, but let me say that who's making the money? are the insurers and the PBMs in this. I mean, I I'm not gonna uh deny that basically launch prices are too high on the pharmaceutical company side, but you have to understand that they have an ordinate control. The top insurers are the top PBMs. So they have total control of the marketplace.
See, there's fertile uh vertical integration is part of the problem too.
Absolutely. And and and if I can say consolidation If you ask me one word to tell you what is wrong with our healthcare system, it's consolidation. And if you go online and you look at the color prescription for healthcare reform two point O you will see it's consolidation is our problem.
I I don't wanna wander here, but the general perception that I know of people around here is the current system, which was changed so much uh under President Obama was l- largely written to benefit the insurance companies. And we have received private briefings on not only that, but the huge cost of fraud under the current system that is just through the roof. Um, but in any event, we'll go for Ms. Randall for her second round.
Thank you, Mr. Chair. Um, I wanna second the challenges of vertical integration and consolidation in the healthcare system. It's uh issue that I worked a lot on in the Washington state legislature when I was there. But um, Doctor Hercher, you were talking about your patients, you know, you see them on their hardest days, having to make really tough choices about um what they can afford, what kind of treatment they can afford to access. And um, I couldn't help but think of I had a friend um who was diagnosed with a very serious and aggressive GI cancer um before her thirtieth birthday and um you know Beth's way to get through it was to think about money as like monopoly money she's like " well either I'm gonna survive and I'll figure it out or I won't and what does my credit card bill mean to anyone?" um which is a really challenging place to be for someone fighting for their life. Um, as your patients are making these decisions about what they can afford, um, what other considerations, you know, are they sharing with you? Is it taking care of their children, their housing? What goes into making this decision about what's possible for them?
It's really interesting. Um, when you talk to patients, they oftentimes won't bring up the finances that, you know, there's, you're sitting in front of them telling them, you know, the worst news of their life. And they don't wanna share with their doctor that they don't, they, they're worried that they cannot afford the medications. They will, they will put it on their credit card, they will sell the house, they will do whatever they can for that glimmer of hope. And they don't want me to make decisions based on whether or not, um, cost is an issue. Um, but they're, you know, I, I actu- oftentimes remind my patients and have to remind my team and myself that these patients have lives outside of these four walls, worked and stopped, although they may not be able to go to it, their children still, you know, anyone who has a five year old knows that I don't know if they care if mom doesn't feel well. Mom's gotta do um what she's gotta do. And so child care continues, work continues, and the bills just keep piling up. So when we talk about even a total, you know, an out of pocket cost of fifty dollars, a hundred dollars, it's not the fifty dollars, it's not the hundred dollars, it's that amount of money sitting on a pile of direct and indirect costs. Um, and, you know, I wish their credit card bill would just go away, but really what it's doing, it's leaving a financial legacy to their kids and their spouse and their loved ones, um, on top of them potentially passing from their cancer.
Thank you so much. Um. You know, Mister Wright, you um earlier enumerated a number of things that Congress could be doing to address uh some of the problems with uh rising health care costs. Can you share again some of the some of your best recommendations that so that we can ensure rising drug prices don't translate into patients delaying, abandoning, or going without treatment?
Uh, thank you, Congresswoman. I'm - I - I first start with coverage. None of this conversation means anything to people who are uninsured or underinsured. People who are uninsured, live sick or die younger, or want emergency away from financial ruin. Um, uh, reversing the cuts that have been made and trying to further expand coverage is, i- i- is a direction we need to go to - to properly, uh, honor cancer patients and make sure that they are covered. Secondly, once they're in coverage, that coverage needs to be comprehensive. And that means not have um untold cost sharing barriers, whether it's because of its oral or IV, b- or just because it's a cancer treatment and it's thousands of dollars. And so having some um review and oversight over benefit desired, whether it's standardized plans, whether it's co-pay caps or other things. But then basically that is basically just a cost shift within the insurer to then shift onto other types of cost sharing or to premiums, if you don't deal with the base cost of why the drugs are so darn expensive to begin with, and that means dealing with the - the - the issues of why drugs are so expensive, whether it's with regard to patent abuse, whether it's with regard to, um, other, uh, d- issues of, uh, problematic practices of just - or just even just having the government negotiate for the best possible deal, like, uh, both President Biden and Trump did under the Inflation Reduction Act. That would be a, uh, appropriate way to - to expand that Medicaid - negotiating power to more drugs to more people uh across the board.
Thank you. I hope some of those recommendations are things we can work on bipartisanly. Um, I just have one more UC request for you. Um, I ask unanimous consent to enter into the record an article from Families USA, highlighting how the Trump administration is prioritizing insurance companies over American families.
Not objection. OK, we'll call on uh Congressman Gosar one more time.
Sounds good. Uh, Mister Wright, it's it's would you agree with the statement I wanna make here? Good process builds good policy builds good politics.
Generally, yes.
So we're talking about process. Now I guess what we've what we've looked at, we've seen Republicans try to do this comprehensive health care, we've seen Democrats try to do it, and it's a failure all the time. Because I think we lack the aspect of working with our our our federalist system, the incubators called states.
Mm-hmm.
I think we really need to do this to find out how it works, how it's working for them. And and what one may work in Arizona, doesn't work in Washington State, may work in California, who doesn't work in New York. We've got to tailor it to that to that mentor, and we don't know those answers until we do that. We would you agree?
I've been a state advocate for thirty years before taking this job. I absolutely agree.
Mister Akram, do you agree with that?
Yes.
How about you, Doc?
Generally, yes.
Well, so I I'm I'm a looking I'm looking at this and and I I I empathize with you so badly, because you're forced subconsciously to make it especially when you belong to a network. You're subconsciously geared towards that, what they what you know is being paid for and not being paid for, right? That make sense to you? So if you see this vertical integration.
Oh, I see, I see.
Yeah.
They own the docs, they own the pharmacies, they own the hospitals, they and and you're forced to do that. So it subconsciously puts you in a predicament. Well, I know what they're gonna be paid for so that I can get this compensated, but it may not be the treatment of choice.
Correct, yeah. You know, when we are oftentimes playing that calculus in our head, as far as I need treatment fast and what's going, what am I gonna be able to get authorized quickly? Um oftentimes we don't have that luxury of options, but yes.
Boy, I we're in a real mess here because this is just it's a sticky wicked cuz every look everywhere there's a problem. Um. When you look at at at the states, the federalists, Mister Wright, how would you go about doing that? Teach us something we may not know.
I mean, I I think I would look at uh states and what they're doing. The again, I mentioned my past experience um as an advocate, I consumer and patient advocate in California where in covered California, they actually have a public process where the it's not the insh the insurance benefit design is not done in a corporate boardroom, it's done in a public process that includes providers, that includes patient advocates, includes the plans themselves, and they have a straight they have a a little bit of a straight jacket of trying to hit benefit designs that hit seventy, eighty, ninety percent of actuarial value, and so there are real trade-offs. But then they can decide, hey, in order to have the most valuable benefit for folks, let's actually put primary and preventative care in a tier that has the least cost sharing possible with no cost sharing at all. Even if that means a slightly higher hospital benefit, it means dealing with some of the inequities between IV versus oral treatments, so there isn't this weird dislocation where the doctor's trying to not just give the best clinical advice but also trying to help the patient with the financial advice which is not the forte of a do- uh of a doctor. And I think that kind of public process is actually really important when setting standardized plans. That's uh something, so I do believe in the federal system when uh let let states experiment, but when you have a idea that's working, then take it federal across the uh across the land and I think we're trying to do that with the oral with the cancer parity law which is done in forty-three states but we need to fill the gap for the uh the the the the federal plans and other things like that.
Well see, I I get to this point where that uh you know the federal government doesn't know all. And I think we put artificial restraints in when we don't think we're doing it at all. And so I like the marketplace, but I want the compassionate aspect. So I don't know if I I I don't know how to get that. Do you understand where I'm coming from? You know, I want I want the system to work, but I want the patient to be the center focus, because she's put in a quandary as a as a doctor. She is put in a quandary. I want her to be able to say, listen, this is the best ma- mechanism, best drug for you, here's how we get it.
I actually I actu- again uh agree with you on one point, which is I do actually think that some of these kinds of public over things will actually allow the marketplace to work better. If you actually have clear standardized plans, consumers can actually then make apples-to-apples comparisons, rather than be confused by different plans. A person who's buying a p- a coverage today has no idea if they're gonna get bio- uh, what kind of cancer they're gonna get or whether the whether they should check to see if this plan does better with covering oral c- uh uh versus IV. that's not something that should be in somebody's mind when they're doing comparisons.
So so first step for you would be parity with ERISA right?
I would I I I think you you either um do the the good things at the federal level or you allow states to um lift the floor.
Well doesn't that it doesn't challenging ERISA allow you to go to the states more often?
What? I'd I'd
Yeah, doesn't breaking down ERISA actually allow you to to work with states more uh broadly?
I think you could go in either direction. you can either uh allow states to do more of putting the floor in place, or uh pass the the rights and consumer protections at the federal level.
Okay. Well, I thank you very much. I appreciate it. Thank you very much. Um In closing, I wanna thank our witnesses again for your testimony. Now we're gonna go to closing remarks. Uh Ms. Randall?
Yeah, uh Just wanna thank you all for bringing your best ideas today uh to this discussion. Um, you know, health care is such a vital issue for all Americans across the country, folks in red states and blue states and rural communities and urban communities, providers who are trying to keep their doors open and help their patients access the care that they so need and families who are making tough decisions about what they can afford. And um, I think it's definitely our
Um, we've had several committee hearings dealing with health care on this subcommittee. We've had several committee hearings dealing with health care on this subcommittee. and and on the committee as a whole and it's always very depressing to hear the degree to which greed um drives our healthcare system and this is one of the most extreme examples of that so i'm glad we had this hearing today uh i hope the uh people who have been up here remember what they hear on this hearing i will never forget it And, um, because it's the last hearing prior to the election, I don't think my li- my bill will pass this session, but hopefully the people up here can, well, think all view it favorably. We'll see what we can do to make sure it passes last time. I heard simil- similar testimony to this, uh, fourteen years ago when I was in the Wisconsin legislature, and Wisconsin is one of the whatever forty two states or however many states have uh have tried to do this um uh and like i said it you know you hear about all these doctors and what not and big insurance executives and when you're sitting there as a patient and you if somebody is at home watching this hearing uh it's depressing to hear how much which one will make us more money uh drives the system and sometimes inadvertently um would like to to actually talk to doctor kircher uh later about um something or other in these lines in any event uh i wanna thank our witnesses for their testimony today i now yield oh we we take care of that um with and without objection all members have five legislative days within which to submit materials and additional written questions for the witnesses if there is no further business Without objection, the subcommittee stands adjourned.
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