Within 24 hours, an Israeli cancer victim vanquished a multinational drug company, marshaling social media to persuade the firm to release information vital to her further treatment.
And, said Ahava Emunah Lange, she and the thousands of people who pressured Waltham, Massachusetts-based Tesaro Pharmaceuticals taught the company the importance of engaging with their public.
“For three years they had a Facebook and Twitter account with zero activity,” Lange told The Times of Israel. “So many people complained via those channels about the company’s failure to honor its contract with me and share data on the effectiveness of a study I was involved in that Tesaro posted its first social media messages, assuring my friends that they were ‘doing everything they could’ to work with my doctors and to ensure that I could get future treatment.”
Lange had been taking part in a Tesaro trial, but didn’t know if she was being given Niraparib, a drug to treat the ovarian cancer she suffered from, or a placebo. At this point in her treatment, she said, it became critical for her doctors to know which one she was on, but the drug company refused to release her data.
A day after a social media campaign friends and acquaintances opened on her behalf, the company provided her with the details she needed. “With the information, I can now consult and engage in other treatment options, which I would not have been able to do without the data. No physician can work without having full information about their patient, and I am happy that Tesaro chose to share the appropriate information, allowing me to explore further treatment options,” said Lange.
Lange’s saga began in July 2012, when she was diagnosed (at an unusually young 36) with ovarian cancer, an aggressive disease that spreads quickly and is usually fatal. After she contracted the disease, it turned out that Lange suffered from a mutation of the BRCA1 gene – just like movie star Angelina Jolie, who had her ovaries removed before cancer could attack her. “Unlike her, unfortunately, I did not get myself tested in advance, so I ended up contracting cancer,” said Lange.
After experiencing a relapse at the end of 2013, Lange was required to go through chemotherapy for a second time. She completed that round of chemo in July 2014. She was then referred by her oncologists at Jerusalem’s Shaare Zedek Medical Center to a clinical drug trial of Niraparib, a drug that seeks to treat ovarian cancer by “adjusting” the BRCA gene.
An experimental therapy, Niraparib is a type of biological therapy called a PARP inhibitor, blocking the PARP enzyme to prevent the spread of cancer. While PARP is generally beneficial, helping cells repair themselves, its repair activities also help cancer cells thrive. By blocking the PARP, researchers hope that cancer cells will more readily respond to chemotherapy instead of repairing themselves when attacked by chemicals.
Since the therapy is still under development, Tesaro is conducting scientifically valid double blind studies to assess its effectiveness and efficacy. In such studies, patients are usually given either the drug being studied, a placebo, or some other substance. At the conclusion of the study, the results are tallied and submitted to regulatory authorities (such as the FDA), which guide the company on further work needed to get the drug certified.
All well and good – but not for Lange, who was on full clinical remission when she entered the study. Less than two months ago, however, she saw signs that the cancer was returning (she stressed that this did not mean she was or was not given Niraparib; in her agreement with Tesaro to receive information on the study, she agreed not to divulge this information).
“The study continues, but I’m experiencing a relapse and now have active cancer,” said Lange. “However, because I did not have information about how I was treated, I couldn’t begin another course of treatment.”
Lange said the company had promised to tell her anything she needed to know if it became necessary. “When I entered the study I signed an agreement with Tesaro, in which I promised to faithfully follow their course of treatment, and they promised to divulge the information on what that treatment was if my doctors needed to know.”
She did her part, said Lange – but Tesaro refused to do so. The reason? “They said that they had changed the participation conditions during the study. I did not sign any further agreements subsequent to the original one, though, so I didn’t think that applied to me.”
Tesaro tenaciously disagreed and its refusal set off a firestorm. The company, she said, kept promising to divulge the information she needed over the course of more than a week, but also continued to provide excuses for not divulging the critical information.
Lange shared her stories with friends – and social media took up the burden. In the space of 24 hours, over 4,000 people signed a petition addressed to the company, demanding that it provide what Lange needed to know. Facebook posts, tweets, blog entries, and other online messages and media, most of it generated by the English-speaking community in Beit Shemesh where Lange lives, Jerusalem, and around the world exerted significant pressure on Tesaro.
In response, the company stated on Twitter that it “takes our commitment to patients seriously. We have been working with Lange’s physician to initiate the unblinding process.” And on Monday, the company did indeed do so, said Lange, confidentially informing her of what she and her physicians needed to know.
“I am truly grateful to every friend and stranger around the world who took the time to fight for me,” said Lange. “I never really considered myself a social media revolutionary – all I want to do is receive treatment and have my legal rights respected. But hopefully, my experience will influence others who are negatively affected by decisions made by corporations, government, and institutions to make some changes – and get some justice.”