Kalpana Krishnamurthy

I am sandwiched by cancer.

On one side is my nearly 80-year-old father, who has stage 4 metastatic prostate cancer. He's been in treatment for a decade. This past year, when the cancer spread to his lymph nodes, it became a lot more serious. He tried a new experimental therapy that didn't work and made him much sicker. It took him seven months to recover, and now he's waiting to see how the cancer progresses to determine what kind of treatment he will or won't do.

On the other side is my nearly 7-year-old son. He was diagnosed with leukemia when he was 4. He is in remission and doing well in treatment. Every month, he goes to the hospital for intravenous chemotherapy. As of today, we have given him nearly 2,500 pills of chemo to fight his cancer. We have six months left of the three years of treatment; after that, he'll be monitored for at least the next five years to make sure it doesn't come back.

I don't quite know how I got here. To the place where I hope that my dad lives to see the end of his grandson's treatment. To the place where I struggle to describe to my oldest son how his grandfather’s cancer is different from his brother’s cancer. To the place where my mom and I discuss chemo appointments and scheduling, and then suddenly ask, "Wait, who are you talking about?"

All the same, I am one of the lucky ones. My son's cancer is treatable and cure rates are high. My father has been mostly healthy throughout his long and amazing life, and for now, he's comfortable. My daily life is joyful. But it is also full of worries: making sure I stay healthy so our son doesn’t get a fever and end up in the hospital, creating cheerful distractions during his week of intense monthly chemo side effects, and stressing over whether my dad’s latest fainting spell was heart problems or just dehydration.

Since the election of Donald Trump, my daily life has been characterized by a gnawing anxiety. And I am exhausted by the combination of Trump’s discriminatory executive orders, his disastrous Supreme Court nomination, and his appointments of people who don’t believe in science to prominent administrative posts. Add all this to keeping up with his Twitter account.

And then there are the efforts to repeal the Affordable Care Act.

The American Health Care Act (AHCA) that was passed by the House of Representatives was crushing. After the vote, I felt like someone had punched me in the gut. A few weeks later, Trump's budget was a second punch. He calls the budget "A New Foundation for American Greatness." I'm not making that up. Here are some of the highlights:

The Centers for Disease Control's budget was cut by 17 percent, leading to the smallest proposed CDC budget in over 20 years.

The National Institutes for Health (NIH) was cut by 18 percent, or close to $6 billion.

The biggest portion of the NIH cut comes from a $1 billion cut to the National Cancer Institute.

As a mom and daughter to cancer patients, these cuts feel personal. As someone who's part of a community that struggles with staying alive after a cancer diagnosis, this budget feels like a death sentence. National data indicates that, more than any other racial or ethnic group, Asian-Americans die from cancer. Cancer is the no. 1 killer of Asian-Americans and Pacific Islanders (AAPIs). Prior to the Affordable Care Act, about 1 in 6 AAPIs were uninsured. According to a 2015 report, about 2 million previously uninsured AAPIs gained health care coverage thanks to Obamacare.

Currently, the Senate isn't even sharing their version of the health care bill. Because there won’t be a single committee hearing on it, the public will remain in the dark. (Conversely, Obamacare had more than 100 hearings). Only 13 men are aware of the contents, and they are the ones writing this bill with no input, scrutiny, or accountability to their constituents.

Although we have not been informed of its contents, we do know that the bill could dismantle the entire health care system and take away health insurance from about 23 million people, while causing spikes in premiums for low-income families, seniors, and those with preexisting conditions. Because they refuse to hold public hearings or offer details, I have no idea what will qualify as a preexisting condition or if coverage will even be available for those with preexisting conditions. It’s possible that my son will never be able to obtain health insurance under the Senate version of the bill.

Through our journey with childhood cancer, we have met many other people in similar situations. We've met people who live hours away from the closest hospital and who drive hundreds of miles each way for treatment. We've met children as young as 6 years old who are staying in the hospital without an adult because their parents need to work. We've met low-income families who count on the events organized by cancer support groups to help with Christmas presents for their children. We've met parents who are dealing with their child's cancer with no health insurance at all.

I know that cancer families want the same things. We want faster research — and more of it. We want the least common cancers researched to the same degree as the most common. We want access to clinical trials and more information shared between cancer hospitals and research centers. We want to increase Social Security benefits for children whose cancer or treatment has left them disabled.

We need a system that leaves no cancer family behind, whether they are dealing with childhood or adult cancer. We need a response to this disease that is greater than the devastation it wreaks.

The AHCA's version of health care isn't going to give us what we need. It isn't going to cure cancer or even help make sure everyone has health insurance. The AHCA version of health care will make it harder for cancer families, harder for cancer kids, harder for elders struggling with cancer in our communities, and harder for all families to get the care they need now or in the future.

No family should have to navigate costly and inaccessible health care, particularly when dealing with cancer or any illness. As a mother and a daughter in a cancer family, I know firsthand that the proposed health care bill and budget will make our whole country a lot sicker. And we deserve better.

Kalpana Krishnamurthy is senior policy director in Portland of Forward Together.



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