Updated: Aug 20
What do you do when you receive a diagnosis that translates to a death sentence? What do you do when suddenly you have to start advocating to save your own life? How do you convince others to care about the fact that even though we live in the richest country in the world, there are no modern therapeutics available to treat your disease? How do you cope with seeing your child die before you do? Where do you turn when no one around you has heard of your disease? How does your family overcome the financial ruin caused by misdiagnoses and failed treatments?
These are the experiences of over 500,000 Americans who are diagnosed every year with a rare cancer, which includes all children’s cancers. 500,000 is a staggering number, painful to think about and even harder to comprehend.
But consider this: a line of 500,000 caskets, laid end to end, would stretch for 645 miles. Those coffins would reach from New York City to Indianapolis.
In 10 years’ time, 5,000,000 cancer diagnoses will be “rare”. That would be equivalent to the entire population of Singapore.
And over the next decade, technologies like molecular diagnostics, will transform our understanding of the complexities of cancer. We will hurtle through this era of precision medicine, until eventually, EVERY 18 million cancer diagnoses around the world will be considered “rare”. That would equal the population of the countries of Hong Kong, Denmark and Finland combined.
Surprised? So is every Congress member and staffer, friend, family member, patient and advocate we speak to. But it doesn’t end there - perhaps the most staggering fact is this: rare cancers comprise of 95% of all forms of cancers. That’s 380 out of the 400 known forms of cancer. That equates to 1 in 3 cancer diagnoses.
And this is why we are launching this campaign to fundamentally change the narrative, because “Rare Isn’t Rare”.
One question that consistently haunts me in my work is this: How do you tell your loved ones that your time has run out?
If there is one lesson I have learned since becoming the Executive Director of the SHEPHERD Foundation, it is that life is so incredibly fragile. For those of us who have been given the gift of time, how we spend it and what we do with it are the decisions that will define who are, the impact we will have, and the legacies we will leave behind. At the SHEPHERD Foundation, our team is devoted to using our time to revolutionize the rare cancer system because we are the patient, the caretaker, the family member, the friend, the parent and the advocate.
As part of our work, we have come to understand that by leveraging strength in numbers, we can activate the power of a unified voice, which is necessary for sustained change to be made. This is how we reclaim the power to transform broken systems. However we cannot convince Congress - which can overhaul drug development, increase funding for rare cancer research, rectify data issues and ensure clinical trials include rare cancer patients - without getting loud. We cannot get loud without breaking down the silos that exist and mobilizing together. We cannot mobilize together without starting a national dialogue. And we cannot start a national dialogue without first changing the narrative - because rare is not rare.
Here are a three ways that you can be a part of this campaign:
We are proud to partner with Bird and Stone, which was founded on the idea that brands have the power to be vehicles of change. By purchasing a “RARE≠RARE” gold or silver cuff, you not only support the SHEPHERD Foundation, but will be wearing an inherent conversation starter with those around you in order to start changing the narrative at the community level. Click here to purchase your bracelet.
Sign on to support the Cancer Equity Act of 2021 and share with your network: At the SHEPHERD Foundation, we know that molecular diagnostics at the time of cancer diagnosis is the single most powerful tool currently available to improve outcomes and advance the science and practice of treating cancer. However, access to them is inequitable. We are committed to rectifying this and are poised to introduce transformational bipartisan legislation in the next few weeks that will require insurance coverage of these tests for all cancer patients. You can learn more about the bill and sign on in support at our Action Center here.
Share your story: We want to amplify your voice, your story, your journey. Whether you are a patient, a caretaker, an advocate, a clinician, or a researcher - your rare cancer story matters. That’s why we have started a campaign to collect stories from around the country - with a purpose. Each chapter will be devoted to a U.S. state and delivered to your state’s representatives on Capitol Hill. The final book, with all 50 chapters, will be delivered to the President. You can share your story here.
Together we have the power to change the system - because no patient should be left to die. The time is now.
If you would like to learn more about our work at the SHEPHERD Foundation, please reach out at email@example.com. Let’s make change happen - together.