Guest Post: If we truly want to cure complex diseases, politicians should reject price setting

Conversations and healthy debate about issues facing our industry and the health care system are critical to addressing some of today’s challenges and opportunities. The PhRMA blog welcomes guest contributors, including patients, stakeholders, innovators and others, to share their perspectives and point of view.

Today, we are pleased to welcome a guest article from Kammy Kaiser, a proud South Carolinian who was a caregiver to her late mother.

During President Biden’s State of the Union Address, he vowed to find cures for diseases affecting millions of Americans and their families. As someone who has lost friends to cancer and seen firsthand how neurodegenerative diseases can ravage the minds of its victims and break the hearts of patients’ loved ones and families, I know that many of us are hopeful that the president’s words translate to action.

While new treatments can aid in comfort, the prognosis for neurodegenerative diseases remains fatal. Several years ago, my mother was one of those Americans. Following her diagnosis, we searched high and low for something that would help her, but tragically the doctors told us there wasn’t much to be done outside of keeping her comfortable. It was so hard to watch the vibrant, kind woman who raised me, brushed my hair and put home cooked meals on the table lose little pieces of herself day after day. By the time she passed away, she had transformed into someone my family and I hardly recognized.

Since my mother passed, there have been some new, promising developments in the treatment of neurodegenerative diseases. Treatments are available that can slow the progression and ease some symptoms. I know these medications offer so much hope to families and make a huge difference in the lives of patients everywhere. I certainly wish that they had been around when my mother was alive, but our ultimate goal to find a cure must remain.

Science is extremely challenging and progress in treating neurodegenerative disease doesn’t just happen. Pushing forward towards more treatments and cures will require immense investment from private industry and a regulatory environment encouraging, not dissuading this often-challenging innovation. And without their continued efforts, neurodegenerative patients will continue to face the same fate as my mother.

It seems counterintuitive some policymakers are seeking to impose price-setting measures on prescription medications. The non-partisan Congressional Budget Office has estimated that this sort of legislation could put a huge damper on American pharmaceutical companies’ ability to innovate and result in as many as 60 fewer new treatments and cures coming to market in the next 30 years.

Ultimately, I fear that if Congress passes prescription medicine price-setting measures, we may never see a cure for these fatal diseases, or any of the other complex diseases that plague patients.

At the end of the day, if cracking the code on our most complex diseases is really a top priority for policymakers, I urge them to remember where our best, most cutting-edge treatment options really come from and reconsider pushing innovation-stifling price setting measures.