On a cold January morning in 2013, my big sister, Gretchen, took her last, labored breath and died, lying in bed, surrounded by family in a bright, second-floor room in a Cambridge, MA, hospice facility.
She was 46.
The truth is that much of patient diagnosis and care remains guesswork, trial, error and hope."
Over the course of her last month alive, I developed a growing sense of anger and desperation at how her doctors, as well as the drug and diagnostics industries, seemed to have failed her. In the weeks after she died of complications from metastatic cancer, those feelings only deepened as I worked my way through everything that had happened.
I thought of this after reading my boss John Carroll's columns on two situations involving the parents of sick young children, who used extraordinary means to try to gain access to experimental drugs out of reach due to FDA regulations. In both cases, the drug regulatory approval process and the limitations of the modern healthcare system stood in the way of quicker action. As John noted, "There are no easy answers here. Just hard questions."
I don't disagree. I could not find a miracle drug or bold new surgical procedure to save my sister, and I desperately wanted to. We all know the life sciences industry produces plenty of hype about new diagnostic advances, cutting-edge treatments and lifesaving surgeries. Many are profoundly amazing and life-changing inventions that have saved countless lives. But the truth is that much of patient diagnosis and care remains guesswork, trial, error and hope. The limits of biotech and healthcare that remain create a huge gap between expectations in the general population generated by the hype, and what medicine can actually accomplish at this point in time.
Early on, I seethed that the diagnostic tools that my sister's caregivers had at their disposal failed to catch what turned out to be a rare and aggressive form of uterine cancer that grew inside of her for months and spread to part of a lung and her spine. We learned of that horrible diagnosis in mid-December, and she died a month later. As a brother who wanted to help her survive, I tried to think of options all the same. When she was finally diagnosed, the cancer had reached its end stage. I reached out to an old friend who worked at her hospital, hoping to find a clinical trial that would consider an end-stage patient, or some kind of experimental surgery. Was there anything that could give her a shot at life?
My family and I quickly realized that her doctors believed there were no drugs advanced enough to beat back this particular kind of cancer (a sarcoma) at this late stage. My friend explained to me that there were no clinical trials available to address this unusually aggressive cancer. Instead, the hope was that traditional chemotherapy would at least pause the tumor growth and maybe help it regress for a while. But chemo didn't work. She had so much cancer inside of her, surgery wasn't even on the table. We also struggled unsuccessfully to obtain medical marijuana to bring her comfort, even though Massachusetts had legalized it months earlier.
Nothing worked.
Gretchen's last month was filled with massive amounts of pain and painkillers. Still, in her weakened, frail state, she didn't give up, even near the end. My sister convened a meeting at the hospital with her entire care team to discuss options. There weren't any--no miracle drugs, experimental surgeries or cutting-edge clinical trials. Hearing that she was out of choices, the decision to move from hospital to hospice care quickly came to pass. She didn't dwell on what couldn't be fixed.
I will never forget her last moments alive as long as I live. Watching a formerly vibrant, fiercely independent and single-minded force of nature succumb to a rapid, aggressive illness was the most wrenching, soul-crushing thing I have yet experienced in my 45 years of life.
The author and his sister, Gretchen, in 2012.
Today, more than a year after she died, I am generally at peace with what happened. Pharmaceutical companies largely focus their energies on promising drugs that can reach large populations. That is the financial reality of the industry. Also, not every cancer has a matching treatment ready to go to work against it, as was the case with my sister. Even cancer treatments with a track record of success can be a crapshoot. They don't work for everyone. Diagnostics developers are creating tests every day to help match the right drug with the patient for whom the treatment will work best. But diagnostics (particularly molecular diagnostics) is still evolving as an industry, and tests aren't foolproof. Failure is more commonplace in medicine than we all would hope.
I know all of this, but I also realize I was as desperate as those parents who wanted to try any treatment they could to save the life of their children. When it became clear that those options weren't on the table, I became angry. Gretchen was the mother of a young boy, a big sister to three grown brothers who loved her dearly, and the daughter of parents who had to watch their firstborn child wither away. Couldn't everyone try a little harder to save her?
I understand that the industry is imperfect and evolving. I believe that over time, drug companies and researchers will come up with tests and treatments to better address the cancers and other diseases that affect us. I also believe they'll develop new tests and treatments to combat illnesses that current med tech and drugs can't yet reach.
Until then, life goes on, but I feel the loss of my sister every day. If I could, I would have done anything to save her. She helped shape the person I am today, and I wanted to find some person or organization who saw that and would fight like crazy to keep her alive. That didn't happen, and I understand why. Medicine works the same way with other patients in similar situations. Still, even now, as much as I know that doctors and researchers and life sciences companies are doing what they can to help save people's lives, I want them to try harder.
-- Mark Hollmer, Senior Editor, FierceMedicalDevices/FierceDiagnostics (email | Twitter)