Using the ‘Net to take on a pharma giant to help a cancer victim

Update: Keith Knapp is also petitioning Bristol-Myers Squibb and Genentech, alongside Merck.

Last November, Mikaela Knapp was diagnosed with an aggressive strain of kidney cancer, which metastasized to her brain. Knapp is 25.

Prior to her diagnosis, Knapp had worked as an account coordinator at SparkPR, a technology-focused public relations outfit in San Francisco. At Spark, Knapp developed an affinity and appreciation for technology. Meredith Obendorfer, who worked closely with Knapp, describes her as “a typical AC — bright, bubbly and eager to develop her media relationships.”

In the wake of her diagnosis, Knapp’s family and former colleagues have banded together to rally the media. The goal is to put pressure on Merck, one of the largest pharmaceutical companies in the world, to include Knapp in a potentially life-saving clinical trial.

As Obendorfer puts it: “We’re fortunate to possess skills that help spread impactful stories fast and far. Mikaela’s struggle with cancer and her fight to get the drugs she needs to survive popped up over social media and quickly gained momentum, particularly given the social nature of our community.”

After six months of treatment, Knapp is running out of FDA-approved therapies. After perusing the Internet, her husband (and high school sweetheart) Keith stumbled upon research into new therapies that can attack cancer by inhibiting a cloaking mechanism that tumors use to disguise themselves from the immune system. These drugs, called anti-PD-1 or anti-PD-L1, are under development by pharma giants, like Bristol-Myers Squibb, Merck, and Genentech.

The new crop of immunotherapy drugs essentially set up a fair fight between the immune system and the cancer. But Knapp is considered ineligible to join any of the ongoing clinical trials due to her brain metastases.

Knapp’s family is hopeful that Merck will grant her the “compassionate use” of the drug lambrozlizumab. According to Keith Knapp, Lambrozlizumab has demonstrated strong potential in previous trials on kidney cancer patients, and could be FDA-approved in 2015. Her network is petitioning Merck with a viral Twitter campaign (the hashtag is #wegotthis), Facebook group, and an online petition. The Change.org petition has received 50,000 signatures at the time of going to press.

“I’ve been amazed at how emotionally charged the response has been,” said Keith Knapp in an email. “Mikaela’s former colleagues at Spark PR have been instrumental in leading a media push that will hopefully get us on the national stage by next week.”

Merck has yet to respond publicly to the campaign. Keith Knapp has asked anyone with a personal connection to Merck reach out via the email address provided here.

Bowing to public pressure

While deeply inspiring, Knapp’s story raises some larger ethical questions about clinical trials in the digital age.

If this campaign is successful, it wouldn’t be the first time that drug companies have bowed to public pressure. Chimerix, a small and unprofitable biotechnology company, recently made an experimental drug available to a boy in Virginia who is suffering from an infection he contracted while being treated for cancer. Chimerix made this decision to grant the drug in response to a public outcry on the Internet.

It’s a highly sensitive issue with drug companies fearing that if and when an illness progresses, their drug will be blamed. This could potentially lead to regulators halting promising clinical trials. As Forbes’ Matthew Herper writes, some of the experts maintain that medication shouldn’t be dispersed to the person with the “saddest story or biggest social media presence.”

Knapp is in a rare position to have a public relations firm in her corner, but countless others do not.