In May 2007, I met the man who would eventually become my fiancé after just 10 months of dating. When we first met, Dan casually mentioned that he was a cancer survivor. It was hard to believe. He was 24, and we were standing in a bar after playing football in a social sports league. He certainly didn’t look or act like he had cancer. Ours was a whirlwind romance, and within a few weeks we became inseparable. We went to baseball games, started training for a 5k and played hooky to go to a water park for his birthday. A few months into the relationship we took a trip to Boston where Dan told me he loved me for the first time by hiding the words in a crossword puzzle he created to keep us busy during the flight. I knew from very early on that Dan was “the one”.
Dan had already been living with cancer for two years by the time we met. At the time he was diagnosed he was in graduate school, coaching a Division 1 golf team and training for a marathon. As a 22 year-old athlete with no family history of cancer, the diagnosis was a shock. Within the first year of his diagnosis, two lines of treatment failed to produce any measurable results, and his quality of life was impacted. He received chemotherapy and radiation and experienced almost every side effect to treatment that you can imagine—nausea, vomiting, edema and hair loss (though he didn’t have much to begin with). While odds were narrowing that there would be viable treatment options, Dan and his doctor did not stop working together to evaluate options. And ultimately they did find a game changer in a targeted therapy.
While on this drug, Dan was able to live on his own terms as a regular guy. It sounds silly to say, but I am so thankful for that drug, because without it, I would have never met him. Recently, in attempt to push back skyrocketing cancer drug prices, the American Society of Clinical Oncology (ASCO) proposed a 100 point formula to simplify the complex maze of statistics to help determine whether a drug is worth the expense by weighing its ability to extend life against its cost and side effects. In theory, the spirit of what ASCO is attempting to do is reasonable–helping patients navigate the overwhelming amount of information with a doctor they may barely know to make a decision about how to approach their treatment. What caught my attention was the comparison of multiple drugs, all of which Dan had been on at one point during his treatments. And the one that gave him the most life scored a zero. That was hard to read. The drug to which I owe my time with Dan, was literally last. Yet, based on our experiences, the drug was the least toxic and produced the best quality of life. Other drugs used to treat the same cancer scored much higher on the scale, yet left Dan sick for days, covered in a rash or struggling with thrush so badly he could barely eat.
ASCO’s scoring system awards points for Clinical Benefit (achieving overall survival, progression free survival or response rate), toxicity and palliative care. This score is then compared to the overall cost of the drug. I am not an expert, but as someone who sat beside a loved one while weighing treatment options, I have several issues with this formula:
1. First, clinical benefit varies widely on a patient-by-patient basis. Some drugs work well for those with a specific genetic mutation, and those without that mutation will see zero benefit. In our case, a drug that worked wonders for others but left Dan with a rash that resembled Freddy Kruger.
2. Second, the formula gives great weight to clinical benefit vs. toxicity by a 4:1 ratio. While some patients may immediately gravitate towards the drug with the greatest statistical chance of extending their life, this formula does them a disservice by not taking into account the horrendous side effects that go along with the treatment.
3. On that note, where is a measure of the chronic, long term side effects in the ASCO formula? Those with Dan’s type and stage of cancer have a 5 percent chance to survive 5 years. While that should provide hope to the optimistic, what it lacks is the realistic view of what that life will actually be, and if it’s even sustainable for more than 1 or 2 treatments.
4. I am almost offended that the only measure of cost included is that to acquire a drug. What about collateral costs? For example, the time spent out of work for both the patient and caretaker can be a huge consideration, as well as incremental costs to manage side effects. In addition, many patients and loved ones have to travel long distances or hire additional resources to manage their lives, including mental health services, childcare or even a cleaning service. And there is no way to measure the qualitative impact of a life interrupted by treatment in terms of the loss of enjoyment of daily life.
5. Lastly, where are the guidelines to adapt this framework to a specific individual? How does a doctor work with a patient to take their needs and desires into consideration and adjust the formula accordingly? I assume that in a perfect world, a doctor has the time to consult a patient and involve their family, but that is not a reality. For example, my insurance begins to charge extra once I’m with my primary care doctor for more than 15 minutes. I gladly pay this amount, but the idea that other patients will have enough information and gain a level of comfort to make any medical decision, let alone one about cancer, is absurd. How does ASCO’s framework allow the patient to participate in a meaningful dialogue to truly decide how to weigh the question, “Am I willing to endure awful side effects for a chance to live the longest (which may only be several months) or would I accept a shorter amount of time with a better quality of life?”
Where in ASCO’s scoring system does it quantify the benefit of extending a life? Had this system been in place when Dan first considered the targeted therapy that was so successful for him, he may have declined and been dead in a few months. What a waste that would have been for the world. Dan was able to complete graduate school and work full time at a cancer advocacy organization raising funds to improve the quality of care for people with cancer. And, he created hundreds of thousands of dollars in income for himself, and received benefits that funded his treatment. Dan founded an organization in the National Collegiate Cancer Foundation that has raised over $300,000, awarded close to 200 scholarships and helped thousands more young adults impacted by cancer. How are those gains used to offset the cost of a drug in ASCO’s formula?
And on a personal level, how can you measure the value of extra time for anyone? In the several years on ASCO’s “zero” drug, Dan was asked to be the godfather to a beloved niece, and was able to hold his other nieces and nephews when they were born. He was his brother’s best man, celebrated his friends’ engagements and watched his friends get married. He inspired every person he met by openly sharing his cancer journey, and he comforted those dealing with the disease by being open about his. Dan was able to travel, work, play sports and dream of the future. And he met the love of his life, and in even just a short time, made her world complete.
Sadly, Dan and I were never able to get married. He passed away March 16, 2009, the day before my birthday and 12 days before our wedding day. Ultimately, the targeted therapy–the one that scored a zero according to ASCO–that had worked for so long, simply stopped working, and we were forced to turn other options which sustained his life for several months, but at a severe cost. In what would be one of the last trips of his life, Dan and I traveled to the pharmaceutical company that produced ASCO’s “zero” drug so that he could deliver a patient speech to its doctors and researchers. I am so thankful I held onto it because his words couldn’t be more relevant today.
“Rarely do you hear someone say that chemotherapy is a gift. But I can honestly say this drug was a gift. It made life so easy. Recovery time was so short. I would receive treatment on Friday and be back to work by Monday! I’d go drinking with my boys. I’d travel, enjoy a round of golf, have the stamina to go for a mile or two jog, eat Thanksgiving dinner and hold it down, and most importantly, the drug allowed me to meet my fiancé.
I’m thankful for the drug because it allowed my fiancé to fall in love with me, a cute lovable happy-go-lucky guy that swept her off her feet with a carriage ride around the D.C. Capitol on our very first date. A guy that put up a poster size message on Valentine’s Day on the side of a building for all to see. She didn’t fall in love with cancer Dan, she fell in love with regular old Dan – “Dan in real life,” and this drug gave me that sense of normalcy.
While going through this journey, the survivorship component becomes that much more important. Innovative therapies with less toxicity and an improved quality of life are what are important to the patient. It’s about giving cancer patients a chance at a normal life.”
I only wish for others in a similar situation that they have doctors who will take the time to develop a plan that treats the patient, not just the disease, and weighs the benefits of life in addition to the cost of a drug. And while I wish desperately that Dan was here, I know he would make the same treatment choices all over again if it meant one more day with us.