A cancer patient warns: Don’t sacrifice cures for drug price transparency

By Deborah Goldberg
Special to The Sacramento Bee | Link: https://t.co/oIJ7TJLU14
August 28, 2017

Cancer is frightening in the abstract, and even more so when it becomes your reality. Three years ago, I was diagnosed at a relatively young age with late-stage colon cancer and have since gone through extensive treatments.

The love of my husband and three children, the dedication of health care professionals who treated me and the support of patient communities such as Colontown have helped me stay strong.

But there is something else that helps push me through difficult treatments – the hope that new research and clinical trials will yield innovative medicines that will allow me to be there for my children. But legislation before the Legislature could jeopardize that hope.

The stated goal of Senate Bill 17 is to increase transparency by requiring drug companies to give advance notice of price increases. I am concerned that the bill will have unintended consequences that could harm patients in the long run, while doing nothing to address prices that consumers actually pay for medicine.

Advance notice of price increases could allow unscrupulous wholesalers or distributors to stockpile large quantities of drugs and charge consumers even higher prices for drugs that treat cancer and other serious conditions.

And the regulations in SB 17 could severely jeopardize investment in research and development of the next wave of innovative treatments.

We have reached an inflection point with cancer research and treatment. The care I am receiving is light years ahead of just a few years ago. Today, treatments are more precise and targeted. People with the same type of cancer may receive different medications, depending on the specific profiles of their tumors.

The result of these innovations is that there is more hope for remission or recovery than ever before. The hope I have has been inspired by new clinical trials, new medicines coming down the pipeline and breakthrough discoveries. I hope that new treatments will not only help me, but help the friends I made in support groups and the countless others who are waging their own fights.

In some ways, I am lucky. I am able to obtain and afford the chemotherapeutic and biologic treatments I need. Not everyone is in the same position. Restrictions imposed by health insurance companies have created uncertainty for some cancer patients about whether they will have access to treatment.

This is why, like many other patients and caregivers, I support smart measures to increase health care transparency and rein in drug costs. However, we should be careful not to jeopardize access to innovative treatments. We should take a sensible approach – one that actually brings down prices and does not discourage investment from companies seeking new cures.

Hope inspired by innovation has been a powerful force in my cancer treatment. I respectfully urge the Legislature not to pass bills – including SB 17 – that would threaten that hope for others.

Deborah Goldberg is a regulatory compliance attorney and patient advocate in Los Altos. She can be contacted at deborahgoldbe31@hotmail.com.