Breast Cancer Awareness Month 2024: Advocacy Guide

The Needs

Navigating Care

The most pressing need within the hereditary cancer community is not simply access to care, but access to healthcare providers that have knowledge about genetics and know how to guide patients in decision-making. Though a firm believer in “knowledge is power” when navigating hereditary risk for cancer, Schlager shared that there are significant pros and cons that individuals need to consider before making the decision to undergo genetic testing.

Once confirmation of a genetic predisposition has been confirmed, previvors and survivors of hereditary cancers need healthcare providers who know how to evaulate risk, how to talk to patients about the implications, and how to guide them toward the best course of action.

Providers with such expertise will know the necessity of collecting data, including family histories that include third degree relatives. They’ll also know what tests to order and when to refer patients to specialists, and what kind, depending on the kind of mutation they carry and hence, the kinds of cancers for which they are at risk. This ideally includes a referral to a genetic counselor, but there are other health care providers trained to provide this service, such as nurses who have genetics certification or physicians with genetics expertise.

Dozens of mutations have been identified as placing carriers at increased risk for cancer. Drawing on her personal experience with the BRCA mutation, Schlager explained,

Each [mutation has] unique recommendations. But you might need to start breast cancer screening as early as 25. You might need to do things like breast MRIs, and in some cases, risk reducing surgery… especially if you’re high risk for ovarian cancer, because we do not have early detection for it. The only way to reduce risk effectively is to remove the ovaries and tubes…a BRCA1 one mutation carrier is recommended to remove ovaries and fallopian tubes between 35 and 40 versus a BRCA2 mutation carrier, between 40 and 45. Other mutations might be different.

Another huge factor is that hereditary cancers are often treated differently than cancers in the general population. For example, a specific class of drugs, PARP Inhibitors are often used to treat BRCA carriers. Hereditary cancers are often more aggressive, too, and, as a result, may be treated more aggressively. Schlager explained,

If you develop, for instance, cancer in one breast and you have a mutation, it’s very likely you’re going to be advised to remove both breasts, just because the risk of getting breast cancer in that other breast is much higher than the average population.

Navigating Cost

Anoter important consideration tied to access to knowledgeable healthcare providers is cost.

This comes into play when navigating downstream care for hereditary cancer risk because, as Schlager pointed out in the case of breast cancer risk, screenings such as mammograms may be recommended much earlier than for people who are not at high risk in addition to other imaging such as MRIs. “In many cases,” Schlager said, “the insurers are not required to cover these screenings.”

This is because the Affordable Care Act follows the guidelines for screenings recommended for the general population. Insurers may follow the National Comprehensive Cancer Network (NCCN) guidelines, considered, “the best of the best when it comes to hereditary cancer risk management and and also treatment for that matter” according to Schlager.

However, they are not required to by law.

What this can mean, for example, for someone with Lynch syndrome—a mutation said to be responsible for 80 percent of colorectal cancers—is thousands of dollars out of pocket.

The NCCN guidelines recommend that individuals with Lynch syndrome begin screenings at 20 to 25 years of age every one to two years, whereas the general population is recommended to screen once every 10 years beginning at 45.

This presents a huge financial burden for the person with Lynch Syndrome who is tryng to do their due diligence while dealing with an extremely high risk of cancer. Schlager further explained the financial ramifications:

Because it’s not required under the Affordable Care Act, [insurers] will often apply it to the individual’s deductible. So if you have a $5,000 deductible and you go for that colonoscopy at the age of 25, it doesn’t have to be covered under the Affordable Care Act, because the [ACA] only covers screenings that are appropriate for the average risk American. So they don’t have to cover colonoscopy until you’re 45.

Another consideration is the issue of passing a mutation on to children. In such cases, IVF can be used in tandem with Pre Implantation Genetic Diagnosis (PGD) to determine if the embryos carry the mutation. However, outside of the state of Illinois, which recently passed a law to provide coverage for this service, PGD isn’t typically covered. Schlager further explained the levity of this circumstance with regard to fertility preservation:

It’s not only for somebody who’s diagnosed with cancer, which is critical, but for families that have these mutations, especially if a woman is facing removing her ovaries. Maybe she hasn’t had her family yet, and she wants to preserve that option for the future, but she’s feeling pressure. She could harvest her eggs and keep her uterus and still carry a baby in the future.

What You Can Do

FORCE is the only organization that specifically focuses on the hereditary cancer community. Here’s how you can help:

1. Donate. Money always helps.
2. Participate in medical research.
3. Volunteer. Become a peer navigator, support group leader, or research advocate.
4. Support Policy Work. Support efforts at the federal and state level around access to care and genetic discrimination by calling or emailing representatives or speaking at events.
5. Share your story: if you have an experience being denied coverage, let FORCE know. It will help efforts to expand laws and protections against genetic discrimination.