State by State: Advocacy for Patient Access to Quality Cancer Care

“State legislators play a significant role when it comes to health insurance oversight, regulation, and innovation.” - National Council of State Legislatures

At this point in the calendar year, state legislatures have adjourned for the summer. But for organizations advocating for laws in support of access to quality cancer care, there is no pause. For oncology state and national professional societies, patient advocacy groups, and coalitions that educate legislators about barriers to patient-centered care delivery, advocacy is always ongoing.

Texas’ Legislative Victories

The 87th Texas Legislature adjourned May 31, 2021. This Legislature convenes every two years, opening on the second Tuesday in January of odd-numbered years. But although legislative sessions are limited to 140 calendar days by Texas’s state constitution, hearings and special sessions may be scheduled in between.

How difficult is it to move a bill through both houses of the Texas Legislature in a single session? For perspective, this year’s session saw a total of 6,927 bills introduced in the state’s House and Senate. Of these, only 1,073 passed both houses. “I think we’ve made more progress than we ever have, says Texas Society of Clinical Oncology (TxSCO) President Debra Patt, MD, of the most recent session. “But we still have a tremendous mountain of challenging issues in Texas that conflict with patients’ abilities to have good cancer care and a good life afterward.”

Two important pieces of legislation (HB1919 and HB1763) passed by the 87th Texas Legislature helped limit the influence that health insurers and pharmacy benefit managers (PBMs) have on where and how patients can access prescription medications. “As a cancer care provider, about 35 percent of the therapies I prescribe today are oral oncolytics,” says Dr. Patt. “So how payers dictate where those prescriptions are filled and what information PBMs can get from patients to steer therapies away from the medically integrated dispensaries that are in the patient’s cancer center directly impact the care patients receive.” Passed June 18, 2021, HB1919 is strong anti-steerage legislation directed at health benefit plan issuers and pharmacy benefit managers, and HB1763 (passed May 26, 2021) precludes Direct and Indirect Remuneration (or “clawback”) fees.

Additional wins for cancer care advocates in Texas this year include the passage of SB1065 on June 16. This legislation expands coverage under certain health benefit plans for breast cancer diagnostic imaging to include MRI and ultrasound when needed. In addition, HB428—signed into law June 7—expands health benefit plan coverage for ovarian cancer testing and screening to include any test or screening approved by the U.S. Food and Drug Administration for the detection of ovarian cancer.

Legislative Challenges

While these successes are encouraging, legislation aimed at covering fertility preservation services for patients with cancer stalled once again, despite strong advocacy efforts. Advocates, including the Texas Society of Clinical Oncology joined a coalition—Texans Protecting Parenthood After Cancer—to mount a clear, concise advocacy campaign.

“The issue of fertility preservation among cancer patients is incredibly important,” says Dr. Patt. It is especially important to women of childbearing age, she adds. “It’s expensive. It delays care. It’s very complicated.” Insurers have historically treated fertility preservation as an elective procedure. “But for patients with cancer, it may be their only chance at having biological children after surviving cancer,” says Dr. Patt.

Dr. Patt is encouraged by the progress the Texans Protecting Parenthood After Cancer coalition made this session in moving fertility preservation legislation HB293 into the state Senate. “I think there was a lot of support for it moving forward . . . it was [just] not prioritized among our legislative officials in comparison to other pieces of legislation,” explains Dr. Patt. “So while it will be our third bite at the apple to get this legislation moved forward, I would say this detour and delay is not a failure, because frequently, policy takes many tries before it actually moves forward. I think there are many issues that did not make it through this year that will be fodder for special sessions, for interim studies, and for additional bills to be filed at the next legislative session.”

Fertility Preservation in Hawaii

Legislation to support fertility preservation for patients with cancer is also a continuing advocacy priority for the Hawaii Society of Clinical Oncology (HSCO). In Hawaii, a state statute establishes some prerequisites for legislation related to mandating health benefit coverage. Hawaii’s state constitution requires that each regular session of the state legislature begins the third week of January and runs for 60 days. This year's legislature adjourned April 29, 2021.

The push for insurance coverage of fertility preservation in Hawaii began with legislation introduced in 2012. Per statute, before the Hawaiian legislature can consider any measure that requires health insurance coverage for “specific health services, specific diseases, or certain providers of healthcare services as part of individual or group health insurance policies,” legislators must request a report from the state auditor that assesses “both the social and financial effects” of the coverage that would be mandated.

In 2012, the report completed by the state auditor found insufficient data to demonstrate the proposed legislation’s impact. This year, HSCO and its allied advocates proposed legislation (HCR110) to update the auditor’s report through the evaluation of experiential data from the states that have enacted fertility preservation health coverage laws (California, Colorado, Connecticut, Delaware, Illinois, Maryland, New Hampshire, New Jersey, New York, and Rhode Island). The auditor’s office did not support this approach, so the bill failed to move forward.

Educating Lawmakers

HSCO will continue to prioritize its support of insurance coverage of fertility preservation services in its ongoing advocacy efforts. One important step is bringing the issue to the attention of legislators and explaining why access to fertility preservation is so critical for patients who are already struggling with a cancer diagnosis. HSCO President Michael E. Carney, MD, a gynecologic oncologist at the University of Hawaii Cancer Center, has cared for a number of patients over the years who wanted to have the option of fertility preservation but simply could not afford the expense.

“Having cancer and facing the possibility of not being able to have a family as a result of treatment for a potentially curable disease is doubly devastating to our patients and their families,” Dr. Carney says. “Thanks to advances in the field of fertility, amazing new high-tech fertility preservation options are available that can now allow patients to have a family even after intense cancer treatment. But these options are very expensive.” The costs associated with egg harvesting, embryo freezing, sperm banking, and surrogacy are prohibitive for most patients with cancer. Fertility preservation legislation in Hawaii could change that. “This should be a right for patients with cancer,” says Dr. Carney.