Dispatch from ABC4: Treatment Guidelines for Metastatic Breast Cancer

In November, Janine Guglielmino, MA, our senior director, programs and partnerships, represented LBBC at ABC4, an international consensus conference in Lisbon, Portugal. This event, held every 2 years, brings together healthcare professionals and breast cancer advocates from around the world. The goal: to agree on evidence-based treatment standards for people with metastatic (stage IV) and locally advanced breast cancer.

This is the first in a series of three posts Janine wrote about the conference. (To read her second post, click here. To read her third post, click here.) This week, she and other LBBC staff members are in Texas for the San Antonio Breast Cancer Symposium, along with many other patient advocates and thousands of cancer doctors and researchers. Read LBBC's reports from the conference.

In the U.S. doctors use a variety of treatment guidelines, including those developed by the American Society of Clinical Oncology and the National Comprehensive Cancer Network. In contrast, the European School of Oncology and the European Society of Medical Oncology (ASCO’s equivalent in Europe), the ABC4 conference sponsors, share guidelines and encourage organizations worldwide to adopt them. (Learn more about guidelines in our 2015 newsletter.)

The conference is the culmination of months of work. Consensus panel members meet regularly to recommend changes to existing treatment guidelines. Then, over two days of sessions, the panelists discuss the impact of recent clinical trial findings, drug approvals, and access to therapies. On the final day, the panel of about 40 healthcare professionals and advocates vote on the new standards. Patient advocates play a key role, ensuring the needs of people with stage IV disease stay front and center.

Alongside my friends and colleagues from the United States, I met passionate metastatic breast cancer advocates from every corner of the world. In our country, most people with stage IV disease have had breast cancer before. But I learned that in many areas, the reverse is true. Some advocates reported little or no access to standard therapies like trastuzumab (Herceptin) and tamoxifen. Others said newer targeted agents, such as CDK 4/6 inhibitors like palbociclib (Ibrance), weren’t covered by public insurance, putting them out of reach for most people. These disparities translate to shorter survival times, especially in the developing world, just as it does for Americans whose lack of insurance denies them access to new treatments.

Other cultural differences were equally striking. After a talk on genomic testing, one woman stood at a microphone and said, “In my country, we don’t even have the right to ask for our tissue samples.” Another explained the challenges of getting appropriate treatment when doctors are not permitted to look at a woman’s breasts. Families sometimes abandon newly diagnosed women at the hospital, another advocate shared, because they cannot afford treatment and know the outcome is grim.

Our colleagues face these challenges with determination. They’re doing amazing things. FEMAMA, an association of breast cancer organizations in Brazil, recently mobilized its members to pressure the ministry of health to offer access to Herceptin. To offer education about metastatic disease, volunteers translate English-language brochures into their native tongues. International advocates work on an individual and a societal level, with activities as wide-ranging as counseling to keep families intact and pressuring industry to lower drug prices.

Worldwide, the challenges of treating metastatic breast cancer remain great. These are reflected in the final ABC4 consensus statements. Instead of simply agreeing upon an ideal course of treatment, panel members provide options for times optimal treatment is unavailable or costly. They list all acceptable evidence-based treatments, because local authorities use the guidelines to justify payment for and coverage of therapy. One new guideline supports use of biosimilars, medicines that are to treatments made from living cells, like Herceptin, what generics are to brand-name versions of traditional drugs made from chemicals. Smruti Koppikar, MBBS, MD, a medical oncologist from Mumbai, reported that by introducing biosimilars, one hospital in India increased the number of eligible patients to receive anti-HER2 therapy from 9 percent to 53 percent. Dr. Koppikar concluded, “The only treatment that works is the one we can afford to give.”

The only treatment that works is the one we can afford to give.

Despite our differences, there is much we share in the breast cancer advocacy community – a commitment to improving outcomes, a passion for sharing information, a dedication to those we serve. At Living Beyond Breast Cancer, we are grateful to ABC4 for the opportunity to gain insight into the guidelines process, and to lock arms with our sisters and brothers assisting people with metastatic breast cancer around the world.