The Patient as Person -- and as Stakeholder

As someone diagnosed with multiple myeloma in 2009, I sincerely applaud those who represent patient's interests on a daily basis, but actual patients need to be directly included in the crucial conversation about cost and value.
06/06/2014 01:55 pm ET Updated Aug 06, 2014

I just returned to New York from Chicago after attending the 50th annual American Society of Clinical Oncology convention. During this meeting there were numerous presentations of academic papers, continuing education sessions for membership and panel discussions that dealt with current and future issues in health care.

One of the panels at this meeting caught my eye. It was titled "Can We Find Common Ground? Stakeholder Perspectives on Value in Cancer Care."

Which key stakeholder was missing from the panel for this important discussion?

The patient!

As someone diagnosed with multiple myeloma in 2009, I sincerely applaud those who represent patient's interests on a daily basis, but actual patients need to be directly included in the crucial conversation about cost and value. We want to be at the table when recently proposed restrictions on medically justifiable procedures and medications are debated. And in the process, we will not be lectured from a podium, you will talk to us as equals.

After all, we patients pay the insurance premiums which compensate medical professionals, pay the taxes which subsidize insurance premiums under the ACA, pay into Social Security, Medicare and Medicaid (which supposedly promised us care in our later years), pay copays for doctors, medications and medical procedures. In addition, philanthropists of ample and modest means create not for profits to aid others that have a dreaded disease, and also fund hospitals and research looking for a cure.

We want the ability to have choice regarding our medical care and in the process not to be told that we are some sort of toxic cost burden on society. The use of the word "toxic" should be reserved for discussing the use and the side effects of harsh liquid chemotherapies like melphalan. It is insulting to those suffering from cancer and other diseases who experience the horrid side effects of such medications to use "toxic" in this truly insensitive way.

We need to know that treatment decisions are based solely on medically justifiable science and are best for the individual patient in front of the doctor at that time. We need to be sure that it is not a decision made by an unknown, unseen and unfeeling bureaucrat who has never seen the patient and view us as a social and economic drain on society.

We want to be treated as individuals, not as mere data points. We want it acknowledged that many of us can and will live beyond mathematically estimated standard deviations on a computer's spread sheet. There is no average cancer, treatment, response or recovery. Treatments that "only" slightly improve life span for some may drastically increase the life span of others. We patients will fight, survive, thrive and contribute to society thanks to transformative and incremental innovations in medical care. And we know that even these small changes will result in further advances. A small change in 2006 led to the pill-based regimen that saved my life, and I want others to have the same chance for novel therapies that I did.

We want to be involved when ethics and the edges of life issues are discussed. Patients will decide whether to have a DNR, living wills and how and when to participate in clinical drug trials, as it is their body and their choice. No hospital or government official should be able to unwillingly use our bodies and information, override our last wishes or dying request or execute a DNR in a manner that is intended to save money.

We want doctor and patient choice that allows us to fight cancer to live long enough to see our children graduate from high school and college, to dance at their weddings and to experience the birth of our grandchildren. I was able to see my daughter graduate from college in 2012.

At ASCO this week there was a lot of talk about defining value. No one but the patient can put a true value on what it means to them to be there for these important life cycle events. We know that our lives have value when we can be there with our husbands, wives, children, parents, caregivers and friends at these important times -- and we also enrich the lives of these people with whom we interact in the process.

We want our medical professionals to be free to practice the art and science of medicine on our behalf, unencumbered by artificial restraints. We need to know that our doctor has enough weapons at their disposal and that they can aggressively fight cancer as hard as we patients want to fight cancer.

We want to be able to place our trust in doctors and social workers employed by hospitals to act on our behalf. Unfortunately, these good people are now caught in the crossfire between medical bureaucracies, insurance companies and government and quasi-government agencies that want to restrict care and hamper innovation. These front line professionals that truly want to help us are being forced to make a decision as to which master they will serve, much to the detriment of the care we receive.

We patients place our lives in our doctor's hands, and have faith in them when they wear a white coat. We do not have faith in them when they are forced by others to wear a green eye shade.