By Maimah Karmo
Maimah Karmo is the founder and CEO of the Tigerlily Foundation, a national women’s oncology and health foundation providing education, advocacy support and resources to young women during and after cancer.
Photo: Courtesy photo
Every two minutes a woman in the United States is diagnosed with breast cancer. At age 32 and with no family history of breast cancer, I became one of those women. In moments throughout my diagnosis and treatment journey, I thought I would become one of the thousands who would succumb to this relentless disease each year. My survival and the stories of millions more is proof that targeted therapies, advancements in technology and improvements to conventional treatments can change the trajectory of cancer diagnoses. Yet, some federal lawmakers are threatening recent progress in the fight against cancer with price setting policies that impact the ability of patients to access critical medications and threaten to halt the research and development of innovative medicines that will lead us to a cure.
It was 17 years ago, when I was diagnosed with triple negative breast cancer (TNBC), a type of cancer that is more aggressive and deadly among Black women and for which there remain limited treatment options. Each year,150,000 women worldwide die from this disease, which is hard to treat, highly recurrent and has a crushing impact on communities of color and younger women.
Due to the tireless work of scientists, researchers, and biotech companies, along with many of my fellow breast cancer survivors, thrivers and warriors, innovative treatments and medicines have paved the way for a brighter and cancer-free future. But the path to bring new treatments to patients should be recognized and valued for how challenging and fragile it is. From the laboratory to reaching a patient, medicines must go through a complex and multi-step process which can take well over 12 years. For patients diagnosed with complex cancers like TNBC, the process to find a treatment that works for them can be even lengthier and more iterative as scientists build upon existing findings to develop treatments that are more targeted, personalized and mitigate severe side effects.
The Inflation Reduction Act’s (IRA) Medicare Drug Price Negotiation Program (MDPNP), and legislation that has already been introduced to build upon the program, unintentionally threatens critical pathways for patients to access medicines that can help them survive complex diseases such as cancer. The IRA includes provisions aimed at lowering the cost of prescription drugs by mandating the negotiation of prices for medicines deemed to pose affordability challenges for patients. While well intended, this approach would actually harm patient access and threaten future innovations.
The process of discovering and bringing a new drug to market involves substantial investments, time and risks. Price controls would lead to less research and development (R&D) investment and fewer drug discoveries. Research finds that the MDPNP is already having a devastating effect on R&D pipelines that patients with cancer rely on – including the development of a drug meant to treat a form of blood cancer and a treatment for ovarian cancer. Within the proposed framework of the MDPNP, at least 135 fewer drugs are expected to come to market by 2039, putting the development of even more innovative drugs and patient health outcomes in jeopardy. It may also lead to 116 million life years lost over the next two decades. This means that for all people, particularly populations disproportionately impacted by cancer, including African Americans who have higher death rates from cancer, we will see significant increases in death rates, with billions added to the burden of healthcare.
Ironically, even once a new drug comes to market patients must overcome even more barriers to access treatments they need, including flaws in insurance benefit design and the unclear and shifty practices of industry middlemen that lead to higher out-of-pocket costs and worse health outcomes. We should commend lawmakers for taking on efforts to address these loopholes and harmful utilization management tactics, but price setting falls significantly short for patients.
While many lawmakers tout equity as a focal point of legislation they introduce within the halls of Congress, these same legislators have supported the MDPNP and similar drug price setting policies, which will only compound healthcare inequities patients are confronted with each and every day. These policies create additional barriers to treatment and care such as accessing small molecule drugs meant to treat conditions such as cancer, HIV and the Hepatitis C Virus. Furthermore, the communities that already face inequities in cancer diagnoses and outcomes will bear the brunt of these unintended consequences.
Over the last 20 years, there has been more than $179 billion invested in health equity in the U.S. Drug price setting in its current form could reverse decades of progress and billions of dollars of investments, irreparably reversing the work of individuals, patients, advocacy groups, scientists, researchers and other stakeholders. Communities of color and other historically under-supported populations need policies that advance, not hinder the progress we’ve already made against cancer.
As a woman living 17 years past a disease that has killed so many of my friends, it is my God-given mission to use the privilege of being alive for empowerment and education – using my pen, my presence and my voice to ensure that other women post cancer diagnosis can live long, healthy lives.
We must continue to invest in our communities and invest in the innovation that has saved so many lives and can move the needle on addressing healthcare disparities. It is that commitment to innovation that has enabled us to begin to turn the corner against cancer. Federal lawmakers must advance policies that enable the critical research and development efforts that have changed lives and futures for thousands of breast cancer thrivers like me. This issue should not be about either/or. How can we all win – lowering drug prices so that patients can afford them, while at the same time, ensuring that investments can be made to ensure research and development efforts continue so we bring new medications to patients. At the end of the day, if patients don’t have the right medications available for their bodies, they die, affordability or not. We should be able to work towards a solution where the win equates to life.
