More Good Days: Protect Cancer Research

By Jo-Ann Johnston

The craziest darn thing happened one Saturday in late January.  I had been laid up since the afternoon before, so when I awoke, I checked my social media feed to see what my friends had been up to in the past day or so. 

Soon I saw a headline, just a few words, that I could not understand. Something about the new Trump administration and sudden restrictions on cancer research dollars.

Restricting the flow of cancer-research dollars? That made no sense, and there was no link to a longer story. I thought I must be misreading or misunderstanding the little text there was; I was still feeling groggy, ironically enough, from a lumpectomy I had undergone the day before to treat my breast cancer. I retreated back to sleep till I could investigate with a clear head.

The question was still there in a couple of days, and even now, several months later. What’s up with the newfound skepticism toward cancer funding requests that had already been vetted, reviewed, and approved, and why disrupt research timelines? Who doesn’t favor finding treatments for cancer, after all? 

To be clear, I’m not worried that my recent course of treatments have been lacking or that my present health is imperiled. Rather, it is clear to me that the treatments prescribed by my wonderful doctors have all been research-informed and rendered carefully and compassionately by the teams at my community hospital (shout out to the C.R. Wood Cancer Center at Glens Falls Hospital, Glens Falls, NY). I dread the possibility that other patients, whether they are treated at research facilities or at the community hospitals that care for most of us, will miss out on important remedies and advances because of ill-considered, surprise political moves.

It turns out that Trump has taken several disruptive actions in the realm of scientific research, including cancer care. First, there was the wide-ranging January grant freeze mentioned above, which was so wide-ranging it attempted to target grants already approved. Even though there was backtracking on parts of that executive action, scientific grants have still been targeted or reduced.

In general, the cuts are saving taxpayer money, Trump advocates have repeatedly said, by way of explanation. 

The administration has also said it is reviewing grants to make sure that government funds do  not go to projects that support or implement what his administration considers unlawful and discriminatory diversity, equity or inclusion practices. In cancer research, according to various media reports, that can mean cutting a program’s funding because it funds the salary of a researcher who is identified as non-white, or because it extends treatments to a patient group from a specific background that the grant-seekers consider under-served by other means.

Several outlets have covered an ongoing dispute between Trump and Harvard University; Trump cut federally funded research dollars over Harvard admissions, hiring and academic subjects. Trump has also claimed some Harvard practices were antisemitic.

It can actually be hard to keep up with the various cases at issue and actual reasons for halting grants.

Scientists Already Calling for Action  

But a common general interpretation heard among research supporters during multiple March demonstrations organized by the Stand Up for Science boils down to this: Trump is willing and even eager to dismiss rigorous science and the integrity of its findings when researchers or their funding organizations don’t adhere to his directives.

Atul Gawande, MD, a well-known author, surgeon and public health researcher who was at the Washington, DC, Stand Up for Science rally, told Scientific American that scientists come under fire in this political climate because “science doesn’t always give the answers that power wants.” 

Now that it is autumn, and federal budget season is here, the talk of research dollars should take on a higher profile. If anyone thought, up until now, that the threats to federal funds for cancer studies were overstated among the wide range of accounts reported from various corners, we now have a clear point of focus. The Trump administration has proposed giving 37 percent less to the National Cancer Institute (nci.gov) for the coming year in the budget presented to Congress. That is, $4.53 billion to the agency that invests in research all over the country, compared to $7.22 billion this year. In lay person’s terms, that is less money for research studies, for treatments, for patient care.

(For a little more context, the parent agency of the National Cancer Institute, the more broad-ranging National Institutes of Health (nih.gov), which oversees a wide range of other organizations charged with treating specific diseases and conditions,would lose nearly 40 percent of its budget under Trump’s plan and be restructured into a smaller organization.) 

Both the House of Representatives and the Senate want to keep the agencies closer to their present funding level, so there will be lots of debate and opportunities to speak. And it is also true that research organizations are trying to raise more money from other sources, beyond the government, to help contend with whatever may be lost. And some researchers are looking for new ways to approach problems.

But what about the rest of us, the patients and survivors and future patients, especially in terms of NCI and cancer research?

October is, after all, Breast Cancer Awareness Month, and seems to be an especially prominent time period among special months. We patients are already seeing advertisements for local fundraising walks and events. Pink-themed merchandise advertisements have been appearing on Facebook and other media.

We breast-cancer patients are a populous group. Breast cancer is the most common cancer among women, after all. The American Cancer Society estimates there are 4.3 million women in our country living with a history of breast cancer.

Of the 18.6 million people now living in the United States who have  or have had cancer of some type, we account for 23 percent, or a bit more than one in five.

We may even grow in numbers or hold steady for a time: ACS estimates that by 2035, 5.3 million women in America will be living with a history of breast cancer, and that the overall population figure for all cancers will be 22 million.

Breast Cancer Patients Support Science

What say we use these numbers to our advantage? What if we expanded the messaging during Breast Cancer Awareness month? In addition to, of course, encouraging regular mammograms, we pronounced that we support cancer research broadly, meaning all types of cancers. That we announce to our elected representatives and others that we know cancer research has come under all kinds of scrutiny in the past year, but that we support science. We know that research into disease and care is in danger of losing priority – and we demand a course correction.

Don’t worry that anyone will be offended or attempt to counter that the current administration is just trying to curb waste in the budget. We don’t consider longer lifespans and improved quality of life as waste, and that is what is important here, to us, and virtually everyone else. Who, we repeat, who doesn’t know someone whose life has been touched by cancer, if not directly, then indirectly?

If we, ourselves, are not well enough to carry this message during these weeks – we’ve been there and we get it – could we ask our friends and families to do this on our behalf? Or, friends and family, would you be willing to take on this task, to write a post-card to an elected official, to put a post on social media? It is a practical thing that many can manage, and it should help.

At least, it won’t hurt.

There are established organizations getting involved in this effort, too, for anyone who feels unsure about how to make contact with a politician or trying another tactic. The National Breast Cancer Coalition has a short article on the front page of its website and items on its social media platforms.

Whatever you choose to do, do it soon. Please