How the founder of technology, Leila Janah, has beaten

Leila Janah, 36, thought she was doing everything right. She started two technology companies with a keen sense of social mission, and she balanced that by exercising daily, eating well and consulting a doctor for regular checkups.

The last thing she expected was a cancer diagnosis.

But in the spring, she discovered a mbad that turned out to be a type of cancer called sarcoma. Sarcomas account for about 1% of all cancers in adults and a particularly rare variety appears in its reproductive system.

In the months following her diagnosis, Janah shared her experiences as a patient on social media, despite the potential risks of investor and client awareness of her health issues.

In the US health care system, many barriers prevent patients from accessing the treatment they need, be it cost, lack of specialists, or lack of resources. Publishing her experience in public has allowed her to find high quality doctors and potential treatments, which could save her life.

In a phone interview, Janah said that her entrepreneurial experiences helped her navigate the complexities of the health system, in part because she had a lot of practice to defend herself as a founding woman in the Silicon Valley.

"I had to be invasive," said Janah. "If there is anything that this experience has taught me, it's not to take no for an answer."

Before the diagnosis, Janah felt that something was wrong. Her weight, which doctors badured her, was probably benign given her age and the absence of symptoms, she felt "threatening," she said.

"Because of my work with start-ups, I am conditioned to trust my instinct," she said, because entrepreneurs are often told that their ideas lack merit or that they will not work. not with people in positions of authority. "And that's especially true when something is wrong."

Janah insisted that other medical tests be done and the results quickly returned. It was a cancer. And it was rare and aggressive. So knowing early earlier than expected would probably have made a big difference.

Another lesson learned from his entrepreneurial career was to try to get as many opinions as possible and then call in a team to evaluate his options.

"It's basically what you do when you shop for a round of financing," she said.

But she quickly hit a wall. Her doctors have all given her contradictory advice, which she suspects is that her cancer is so rare that there are not many previous cases on which to draw inspiration. Despite her best efforts, she could not get them to accept a conference call to discuss her case. Another challenge was to gather her medical information in one place, including records, labs and images, so that she could make sure that all her doctors had access to the same truth about the ground.

This is not surprising. Even today, the exchange of information on patient health is a painstaking process for hospitals and clinics. Doctors still rely on traditional technologies, such as fax machines and CD-ROMs, and their computer systems have not been configured to facilitate data sharing. At one point, Janah had to send FedEx his images of California to New York because the process was faster than sharing a file with two Manhattan-based hospitals.

For a technology entrepreneur, this has been a source of particular frustration. "The administrator was the hardest thing," she said. "I have two medical experts who do not agree, but they can not even share a scanner between two different hospitals one on the other."

At that moment, Janah took things in hand.

She found that her busy specialists would all participate in a high-level conference on cancer, the American Society of Clinical Oncology, called ASCO, in the fall. She decided to fly to Chicago on her own. She also hoped to meet some of the leaders of the new bio-technology company called Epizyme.

Epizyme has a developing drug called Tazemetostat, which is designed for patients with sarcoma. It remains an experimental drug, which means that it has not been approved by federal regulators. Patients can access these drugs on a case-by-case basis, and bioethicists have debated whether promising therapies, which are still in advanced clinical trials, should be available.

Janah's trip was a success. The company's expanded access program allowed her access to the drug and she was able to put her doctors on the same page regarding her treatment. A spokesperson for Epizyme declined to comment on her case, but confirmed that she met the criteria set by her policy.

Janah is now taking the medication and she hopes for the future. Meanwhile, she closed a new round of financing for one of her start-ups. She was relieved that her investors had supported her because she was perfectly transparent about her health issues.

But in many ways, this experience left him with a sense of conflict and confusion.

Janah's professional life has been devoted to two companies, Sama and LXMI, which offer work opportunities to low-income people, especially women. She has been one of the most virulent people in Silicon Valley on the importance of helping people from diverse backgrounds. "The mission of my company is my personal ethic," she said.

But to improve her own chances of healing, she has taken advantage of the benefits that few others have: her relationships, her network, and her resources. For example, years ago she was able to use her savings for egg freezing – which costs about $ 10,000 – to have more options to balance her career with family planning. The experimental drug that she takes for her cancer makes it unlikely that she can carry a child herself. She is therefore relieved to have made this decision.

"I used all the tools at my disposal," she said. "I have had educational privileges and my partner has a good job in a big company," she said. "I also know that I can use my savings to cover the costs that insurance refuses."

Arthur Caplan, bioethicist at New York University, endorsed Janah's badessment. Wealthy, educated or "really good at social media or crowdsourcing" patients tend to have an advantage in gaining access to experimental drugs, as well as the best specialists in the field.

Generally, he explained, doctors will advocate for these patients with pharmaceutical companies. Drug manufacturers are potentially responsible if a patient is extremely ill. They therefore make decisions on a case-by-case basis, often unfavorable to older people or those with low incomes.

These medications do not always work and are not necessarily the best treatment for each patient. But Kaplan and Janah are part of the growing cohort of people who believe it is important to have a policy in place so that decisions are not made to favor the rich and the powerful.

"It's really difficult at a lot of levels, knowing that my care is better than others," she said.

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