Metastatic breast cancer patients not getting the legislative support they need to survive

Metastatic breast cancer patients not getting the legislative support they need to survive

November 21, 2019

When I was diagnosed with breast cancer, I was given information about a support group by a social worker. Before I had a chance to go, I found out that I was actually metastatic, meaning the cancer had left my breast and spread to my bones, which is the definition of Stage IV.
The next time the social worker called me to see if I would be attending, I told her about my updated diagnosis, and I was uninvited from the support group. Her exact words were “the other women would be too scared.”

Those of us with metastatic, or Stage IV, breast cancer like to call ourselves the pink elephants in the room because no one wants to talk about or, sometimes, even to us. I get it, to a certain extent.

Metastatic breast cancer has a higher risk of fatality than other stages, and knowing that someone is going to die is awful. Knowing that you might be next is even worse. You see, 30% of men and women diagnosed with an early stage of breast cancer will go on to be metastatic.

Metastatic patients like me often feel like we’re never prioritized because of the fate we face. Our cause remains underfunded, as the money and focus go to cancer prevention, not treatment of later stages. It feels as though those with the power have decided that we are too small a group and too far gone to invest resources.

Of the funding for cancer research, the funds allocated to the projects that would help those of us living now with metastatic cancer are the least.
There are different estimates, but none of the estimates are greater than 10%. So, the patients who are dying at a rate of 116 men and women in the US daily, we get the least amount of funding.

While I hold out hope for developments through research, I know that other factors play a role, specifically, legislation. I regularly advocate for increased funding and access to lifesaving treatments, yet this very month there is legislation trying to stand in the way of that.

This month, on Capitol Hill, legislators could possibly vote on a proposal that would hinder the types of innovative developments we desperately need by setting restrictive price controls.
Hope for people who fight the same battle I do every day would be squandered as the bill could lead to an estimated 5% to 10% reduction in medical research and development overall.

The kinds of groundbreaking developments we need to fight this monster no one wants to talk about are the ones that would cease to be pursued.
We need legislation that encourages innovation, not punishes it, both on the federal and state levels. More research, more resources, more everything is absolutely imperative, because our worth does not decrease as our stage increases.

-Abigail Johnston, patient from Palmetto Bay, Florida (pictured)

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