My family, like many others, lives with the knowledge that a single inherited gene mutation can raise the risk of multiple aggressive cancers.

That gene is BAP1.

BAP1 Tumor Predisposition Syndrome is a hereditary cancer syndrome caused by pathogenic variants in the BAP1 gene. People who carry a BAP1 mutation face elevated risks of cancers including:

- Uveal melanoma
- Mesothelioma
- Cutaneous melanoma
- Kidney cancer

These cancers can be devastating when found late. But the surveillance that can catch them earlier is straightforward: regular eye exams, skin checks, kidney imaging, and other monitoring guided by a clinician.

The problem is not that families do not know what they need. The problem is that the United States has not caught up.

In 2023, 34 European experts published formal clinical practice guidelines for BAP1 Tumor Predisposition Syndrome through the European Reference Network on Genetic Tumour Risk Syndromes. Those guidelines recognize BAP1 as a real hereditary cancer syndrome and recommend surveillance for carriers.

But in the United States, BAP1 is still missing from the National Comprehensive Cancer Network guidelines.

That omission matters. NCCN guidelines are one of the main standards insurers use when deciding whether genetic testing, screening, and surveillance should be covered. When BAP1 is absent from those guidelines, insurers can treat surveillance as optional, experimental, or not medically necessary, even when a family has a confirmed pathogenic mutation.

For families, that means denied claims. It means paying out of pocket. It means delaying or skipping monitoring that could catch cancer earlier. It means living with a known hereditary cancer risk while the system waits for someone to get sick enough to justify care.

We are asking the National Comprehensive Cancer Network to add BAP1 Tumor Predisposition Syndrome to its Genetic/Familial High-Risk Assessment guidelines.

Specifically, we ask NCCN to:

1. Recognize BAP1 Tumor Predisposition Syndrome as a hereditary cancer predisposition syndrome
2. Establish testing criteria for people and families who should receive BAP1 genetic testing
3. Recommend surveillance protocols for confirmed BAP1 carriers, aligned with the 2023 European consensus guidelines
4. Cross-reference BAP1 in relevant melanoma, kidney cancer, and mesothelioma guidelines

BAP1 was identified as a cancer predisposition gene in 2011. Families have waited long enough.

This is not only a rare disease issue. It is a test of whether American cancer guidelines can respond when the evidence is already clear, the international medical community has already acted, and families are still being denied access to preventive care.

Please sign this petition to tell NCCN: recognize BAP1, close the coverage gap, and give families a fair chance at early detection.

Learn more at www.BAP1gene.com