By Melanie Farrell, ASCO Communications

On September 25-26, 2019, more than 130 oncology care providers from across the United States traveled to Capitol Hill for the 2019 ASCO Advocacy Summit.

The Society’s advocates met directly with Members of Congress and their staff to ask for their support for policies that would improve access to high-quality, high-value care for people living with cancer.

“ASCO is on Capitol Hill so that our members can meet with their representatives in Congress so that they understand how important cancer care is to this country,” 2019-2020 ASCO president Howard A. Burris III, MD, FACP, FASCO, said during the summit. “What I want our Congressional leaders to hear from ASCO is that we care, and we need them to care about the successes that are being made against cancer.”

While advocating on the Hill, ASCO members asked for support for legislation that would improve clinical trial access for patients enrolled on Medicaid and address prior authorization and step therapy requirements, as well as support for reforms that would foster the continued success of the Medicare Access and CHIP Reauthorization Act (MACRA).

“One of the more important things to impress upon Members of Congress and their staff is that we are making incredible progress in our fight against cancer,” said Jason Westin, MD, MS, FACP, a member of ASCO’s Government Relations Committee. “Cancer, not that long ago, used to be a dirty word. People didn’t want to say it out loud. These days cancer is becoming a disease that we fight, and we fight successfully.”

The CLINICAL TREATMENT Act 

During the Advocacy Summit, ASCO members encouraged their Congressional leaders to consider adopting the CLINICAL TREATMENT Act (H.R. 913). This bill would improve access to clinical trials by federally guaranteeing coverage of the routine care costs of clinical trial participation for Medicaid enrollees with a life-threatening condition. Medicaid is the only major payer that is not federally required to cover routine care costs, like physician visits and laboratory studies, for clinical trial participants.

“We want to make sure that everyone has the same chance to survive cancer and to survive it well,” said Karen Marie Winkfield, MD, PhD. Dr. Winkfield is chair of ASCO’s Diversity Inclusion Task Force and joined other ASCO advocates in urging members of Congress to support this bill at the summit.  “THE CLINICAL TREATMENT Act will ensure that everyone who is on Medicaid will have access to clinical trials.”

Furthermore, the CLINICAL TREATMENT Act will ensure that patients from all economic backgrounds have equitable access to drugs and other therapies.

“THE CLINICAL TREATMENT Act is vitally important because it will allow all patients equal opportunity to access clinical trials that would be beneficial to not only them, but also to other individuals who may come from the same backgrounds, including racially and ethnically diverse populations, but also those of lower socioeconomic status,” said Dr. Winkfield. “We want our clinical trials to be representative of every single individual in this country.”

The Improving Seniors’ Timely Access To Care Act of 2019

The Improving Seniors’ Timely Access to Care Act of 2019 (H.R. 3107) would help protect patients from unnecessary care delays due to the prior authorization process by requiring Medicare Advantage plans to provide “real time” authorization for routinely approved services.

Prior authorization policies require patients or prescribers to secure pre-approval from a payer for a prescribed treatment. As ASCO members noted on Capitol Hill, when there are multiple hurdles that patients need to go through, cancer care delays become inevitable.

“Utilization management strategies, like step therapy and prior authorization, hurt our patients because they cause delays in care and cause patients to take drugs that are less effective,” said Melissa S. Dillmon, MD, FASCO, chair of ASCO’s Government Relations Committee. “Last year I had a 50-year-old patient with breast cancer who came to me as a survivor 5 years out from her diagnosis, and she thought she had shingles. But it was actually a reoccurrence of her breast cancer on her right chest wall. She was having incredible pain in her chest wall, and her skin was rotting away. It took me 5 weeks to get prior authorization for a pill therapy to be delivered to her.”

To have the best chance of success, patients must be able to receive the most appropriate care without delay.

The Safe Step Act 

Advocates also urged Congress to pass the Safe Step Act (H.R. 2279/S. 2546), which would make reforms to step therapy protocols to protect patients’ timely access to potentially lifesaving medications.

Payer-imposed step therapy or “fail first” policies require patients to try a lower cost medication, which then must fail to have a desired clinical outcome, before they can access the medication prescribed by their health care provider. This not only delays patient access to proper treatments, it can lead to irreversible disease progression and other significant health risks.

“As oncologists, we’re fortunate in that drugs are being developed in a rapid manner, and we have many new drugs to help us fight different cancers. But we don’t always have the ability to use the cheapest drug because the best drug is sometimes the newest one—and that drug may not be the one that’s first approved on that step therapy utilization management strategy,” Dr. Dillmon said.

Awards and Recognition 

During the Advocacy Summit, ASCO presented its Congressional Champion Award, which honors Members of Congress who are leading champions for patients and survivors of cancer, their families, and their cancer care teams.

“One of the highlights of the Advocacy Summit is presenting ASCO’s Congressional Champion of the Year Award to lawmakers whose leadership on behalf of patients with cancer deserves special recognition,” said ASCO CEO Clifford A. Hudis, MD, FACP, FASCO. This year, ASCO recognized Congressman Ben Ray Luján from New Mexico and Congressman Gus Bilirakis from Florida for their work to advance policies to improve access to cancer care.

“I appreciate ASCO’s recognition of my work, but it’s really all about the patients,” said Rep. Bilirakis. “I believe that we in Congress must do all that we can to ensure that patients with cancer have access to the cures and treatments that give them the best chance to fully recover. I am committed to investing in research to support the discovery, development, and delivery of new treatments and cures.”

Rep. Luján addressed the attendees at the Advocacy Summit reception. 

“Your work and the difference you make every day saves people’s lives,” he said to summit participants, “and it’s certainly why I’m hopeful that more of my colleagues that have not had the chance to learn from you take a moment to meet with you, to spend time with you, to understand the magnitude of a difference that you’re delivering for the constituencies that we all represent.”  

ASCO also recognized volunteers whose advocacy efforts made a significant impact in 2018. Alexandra Thomas, MD, FACP, was named ASCO’s Advocate of the Year for her exceptional contributions and commitment to the Society’s policy and advocacy efforts. A 2017-2018 participant in ASCO’s Leadership Development Program (LDP), Dr. Thomas went above and beyond to improve research and access to treatment for people living with cancer.

“Receiving this honor only makes me embrace the exciting work ahead even more,” said Dr. Thomas. “I hope that will include extending our network so even more voices can join in this chorus, so Dr. Burris’s picture of the ASCO Advocacy Summit will get bigger each year.”

ASCO also acknowledged more than 70 advocates who participated in a variety of advocacy activities, including meeting with federal and state lawmakers and agency staff, conducting outreach, and hosting in-district meetings and site visits during Congressional work periods.

Bringing the Collective Voice of ASCO to Capitol Hill 

The ASCO Advocacy Summit provides a unique opportunity for ASCO members to educate their representatives in Congress about the current realities of the cancer care delivery system and how their decisions impact real people who have cancer. “The support of lawmakers is critical to ensuring that our patients have access to high-quality, affordable cancer care,” said Dr. Hudis.

ASCO would like to thank all members who participated in the summit, as well as those who participated virtually by sending messages to their Members of Congress through social media or ASCO’s ACT Network.

As the Advocacy Summit came to a close, members reflected on what it means to fight for their patients. 

“Many of us hide behind the white coat when we’re in our office. We are able to interact with our patients based on science, and we are able to leave our personal feelings by the side. But I think being involved in politics as a physician, you are able to navigate for your patients much in the way you do in the clinic,” Dr. Westin said. “It’s really important that we use our expertise. If we’re not able to speak up for our patients, who will?”