LEGISLATION TO BUILD BRIDGES, NOT BARRIERS, TO BETTER CANCER CARE

This is an issue that has been heavy on my heart for a while; and the more I become educated about some issues, the more I realize how complex our healthcare system is – with so many lives hanging in the balance.?Sixteen years ago, I received a diagnosis that brought me to my knees: I was diagnosed with triple negative breast cancer (TNBC) – a type of breast cancer that is most deadly in Black women.?I was never asked to be in a clinical trial, and to this day, there are no approved treatments for early stage triple negative breast cancer.?The fact that I’m alive today is a miracle.

We already know that historically, people of color have been largely neglected in clinical trials and advancements in cancer treatments. In recent years there has been a more concentrated effort on health equity through creating more inclusive clinical trial recruitment, targeting additional research for and understanding of barriers that lead to inequity. This is a critical step, but we still have a long way to go to reach health equity.

Fast-forward to today. Congress is considering legislation that would grant Medicare the ability to negotiate prescription drug prices. Supporters argue that this bill will lower the costs of medicines.?I want to believe that, because Heaven knows, cancer patients need help. However, I wonder about the unintended effects this bill may have on minority groups.?And as always, I like to weigh a situation from different perspectives

My first thought was “Awesome” – cutting drug prices will be a huge win for people who are facing financial insecurity and who already have existing financial challenges. Affordable drugs mean improved access, adherence and quality of life.

After doing some research, I learned that if this legislation does pass, it could reduce overall cancer R&D spending by $18.1 billion annually as forecasted by a recent analysis from the University of Chicago.?From 2022 to 2039 price controls would cause a $663 billion reduction in private R&D spending for oncology.?If this happens, my fear is that the cuts will come first from health equity focused research.

Why would anyone think that this is okay??Having fewer treatments and innovation could mean that everyone – despite privilege - could be negatively impacted; and people facing the highest disparities could face even higher health inequities and may continue to die at higher rates.? Furthermore, this could undermine all the advances being made to increase clinical trial recruitment in underserved populations. ?Not only will the decrease in cancer funding result in 135 fewer new oncology treatments to hit the market by 2039, as forecasted by the analysis, but it may also allow the current gaps in effective treatment options for people of color to continue growing. ?Do we think that this is acceptable?

Which brings me to the question of what comes first: someone’s ability to afford prescription drugs and oral treatments … OR not having a targeted treatment available because the drug never made it to market in the first place??If you don’t have targeted therapeutics, you don’t get to live – negating the issue of drug affordability. ??And maybe it’s not either one or the other??How can we put in place legislation that guarantees patients get both.

So, what do we do?

I live with gratitude and the knowingness that every fellow cancer patient hopes for: my triple negative breast cancer (TNBC) is in remission. Yet, when I think back to the challenges I faced, I am deeply worried about how the current federal policy discussion may impact countless others living with cancer.

When I was in the middle of my treatment, I desperately needed nausea medication. The less expensive medicine did not relieve the nausea and my insurance didn’t cover a different newer drug recommended by my doctor. The bill for the alternative nausea medication that I needed to help me regain a better quality of life was huge. Because of the debilitating nausea, which led to dehydration and other side effects, I almost quit treatment.?We know that lack of treatment adherence can lead to death.?Not only was I unable to afford the medication, but I was also undergoing chemotherapy that didn’t target my cancer… so I asked myself, “why am I taking this medicine?”??

The fact is that about 264,000 people are diagnosed with breast cancer every year, and nearly 42,000 women die. Furthermore, Black women are 41% more likely to die of breast cancer than white women and have a 39% higher risk of recurrence. TNBC, which accounts for up to 20% of new breast cancer cases, is particularly aggressive and disproportionally impacts Black, Hispanic, and younger women. Black women are three times more likely than white women ?to be diagnosed with TNBC and have the lowest survival rates at each stage of diagnosis.

Right now, a lot is happening around cancer research. Currently, more than 49% of the total Food and Drug Association (FDA) pipeline is for new cancer treatments. However, these developments don’t happen in a vacuum. Innovation requires enormous financial investment, skill, and time. Only about 6.2% of cancer drugs tested in a phase 1 study actually made it to market.

What happens if Congress enacts the Medicare pricing bill? In a recent opinion piece, Dr. Gary Puckrein from the National Minority Quality Forum (NMQF), a leader in advancing health equity, noted: “What makes this sledgehammer approach to drug pricing so indefensible is that we live in an age of extraordinary data analysis capabilities that make precision decision-making possible. Other industries use big data to accurately predict how people will vote and where they will shop, but the government is still pursuing prescription drug policies that do nothing to increase access for underserved communities.”

That is concerning, but the good news is that people are becoming aware of how changing policy in one area may have negative ripple effects. NMQF and the National Hispanic Council on Aging (NHCOA) recently conducted a poll that weighs the potential impact on the underserved:

o??69% of voters of color believe that reducing the overall cost of health care coverage should be the focus for Congress.

o??78% of voters of color agree that the pandemic made them realize the protection of R&D is paramount to creating innovative treatments.

o??Voters of color (51%), those with chronic conditions (58%), and seniors (61%) oppose government drug pricing after learning it could delay access to new medicines.

To be clear, lower drug costs are absolutely needed. Financial toxicity is very real for cancer patients. I know – I’ve been there. I vividly recall the shock of an exorbitant bill for medicine that would improve the quality of my cancer care, and there are more oral treatments available to patients, including the many who may not have other treatment options.

This situation weighs on me heavily. Our healthcare system is like a dam, and we have our fingers and toes in different parts and the dam, trying to plug all the holes - but at some point, the dam will burst.?The fact is that systems are comprised of people, and people can try to change the system as it stands. However, when the policies on which the systems are created are based on systemic inequalities, then we must re-build the dam, not plug the holes.?

We cannot allow people, particularly a demographic that faces the highest death rates from breast cancer - Black women to become collateral damage. One wrong move can set back our efforts to improve health outcomes and equity by decades. We must be careful and focus on building bridges to better cancer care, not erecting barriers that delay innovation. It would be wise to take a strategic pause to consider all options, and their ramifications, before enacting a measure that delivers some relief now while harming countless Black lives in the future.?