Last fall, I attended an event sponsored by BMT Infonet, a blood and bone marrow transplant information network. After a general session, there were breakout sessions organized by disease, and all of my fellow multiple myeloma patients gathered in one room with a facilitator to discuss our personal medical journeys, compare notes and help each other and our caregivers.
The facilitator started by asking the group "what do you all want?" One male patient immediately said "more time." All of us nodded in agreement. The patient continued, "We want our current treatment to buy us enough time until the next new treatment comes along."
Time is a big enemy that works against cancer patients and all those with chronic diseases. Since myeloma is currently an incurable disease, existing medications only make it a manageable and render it a temporarily dormant condition. The odds are very high that we cancer patients will experience a relapse at some point in the future. I have been fortunate so far in my response to treatment and avoiding a recurrence -- others have not.
And time is truly hell for a lung cancer patient who is told that they have to wait a few years for a drug to be approved to gain access when their diagnosis says that they may die within three to six months. Why are they being denied access to potential treatments? From what is our system saving them?
Nonsensical roadblocks exist that cost us time. One of these is the current electronic health records system, where we see the back of our doctor's head, not their face. They have been turned into scribes as opposed to physicians tasked with treating the patient as person. Another is the wasteful maintenance of certification test which deprives doctors of precious time that they could spend helping even more patients. But the most frustrating are the numerous insurance schemes which put life altering medications on higher formularies with burdensome copayments. These tactics cause doctors and patients to waste hours, perhaps days of valuable time dealing with the horrid delay, deny and defend process to beg for medically justifiable care at the right time.
We want time to live our lives, go to work and avoid going to the hospital to receive intravenous chemotherapies unless absolutely necessary. The time (and costs) of not being able to work are enormous, and despite the one sided chatter at the recent American Society of Clinical Oncology convention, "financial toxicity" has two causes: cost of care and loss of income by the patient and their caregivers. Pill based regimens provide us with more time, allowing both people involved in the care process the ability to work, earn a living and therefore dramatically reduce the chances of bankruptcy.
We want to remain alive, and want to use the time provided by our treatment regimen to do the things that make life worth living. We want to see our children or grandchildren graduate and to be there for weddings, births and special lifecycle events. An insensitive medical professional may state that we are expected to "only get X amount of time to live from the treatment" in question, but they do not understand. We can do a lot of living in the brief period of time that we are provided. And today's treatments that provide a few months of extra life will soon add a few years and perhaps eventually develop into a cure thanks to continuous medical innovation.
And the statements that we "only" have X amount of time" are based on the average patient's response. As I have learned from my experience, we are all different and respond differently in early diagnosis, treatment and our follow up protocols. We want the chance to beat these averages, not merely meet them. Novel therapies provide us with that chance -- and provide the opportunity for thousands of others like me to achieve better results, turning today's exceptional result into the new norm in care for numerous diseases.
Time is also being wasted by insults and ad hominem attacks by hired guns in the healthcare lobbying industry. That unproductive back and forth only assures a status quo which benefits lobbyists and political hacks, not the patients in need. If you are part of the system and have a solution or proposal, say so, don't just damn the system while profiting from its existence. And facilitate an open, honest discussion -- do not avoid debate, block people on twitter or stand behind the protection of a podium on stage and shelter your ideas from being challenged.
As the BMT Infonet patient said, we want to acquire time from our current treatment regimen in order to be alive when the next generation of therapies is developed and approved. However, the approval process for most cancer drugs takes from eight to 12 years, so time is working against us. Groundbreaking innovation is difficult, expensive and takes time. So, let's start working on difficult medical issues to deliver care now by passing the 21st Century Cures Act and promoting quicker development and approval of new, lifesaving drugs and devices.
We patients with chronic, incurable diseases have little time, so a sense of urgency must be created. Any time lost in working together to address the problem results in shorter survival rates and additional fatalities -- these metrics of life and death are the real costs. Why are we debating cost, quality and value when patients are dying during the conversation?
The time is now to get ALL members of the medical supply chain in a room face to face to work together on behalf of patients. And this time, do it in public, not behind closed doors -- and spend some time reading the damned bill!
HuffPost Lifestyle is a daily newsletter that will make you happier and healthier — one email at a time. Learn more