More Moments, More Memories: Pharmaceutical Executive Steps Down to Help Her Sister Through Myeloma Treatment

From left to right: Shelley, Sherry and Christi

From left to right: Shelley, Sherry and Christi

When Christi Shaw made spending decisions as U.S. country head and president of Novartis Pharmaceuticals, she didn’t have a panel of patients staring her down, ready to pounce if she failed to act in their best interest. But she might as well have.

Shaw liked to ask her leadership team: ‘If a patient were watching us, what would they say if they heard us talking?’” She even led workers through an exercise during which they lived as patients for a day.

“We stopped reporting financials as a primary measure of our success at executive committee meetings; she required our finance team to report our results based on the number of patients our products served,” recalls Robert Spurr, U.S. country head and vice president of patient access and health policy at Novartis. “Christi served as a truly customer-facing leader and challenged each of us to raise our heads and look outward to how we could make a difference in someone’s life.”

With that focus on people rather than dollars, it may not seem surprising that Shaw and her team succeeded in helping a lot of patients. “But we also over-delivered for the company, in terms of profitability, every year I was there,” she says. “Doing the right thing has gotten me where I am.”

Which, at the moment, is far from the Novartis boardroom.

On May 1, Shaw, 49, stepped down from her position at the pharmaceutical giant and into the shoes of the people she served during her nearly 30 years in the industry, people with a personal stake in the battle against cancer. She left to take care of her sister, Sherry Whitford, 51, who had enrolled in an immunotherapy clinical trial as part of her fight against multiple myeloma.

The decision, which Spurr called precedent-setting for an executive at Shaw’s level, is also unusual within the cancer community, since most can’t afford to leave work, even to care for a sick loved one. Shaw said she was the most financially able, among members of her extended family, to take a leave. But her decision was in line with the philosophy she had on the job. Executives are interchangeable, she says. Family members aren’t.

“Maybe someday I’ll go back, but where do I need to be at this point in time? This is where,” Shaw says. “If I can say I spent this time with my sister, I’ll have no regrets. And if I tell my son why, he’ll understand that this is the most important thing I could be doing.”

Though she’s headquartered these days in her New Jersey home, or in a string of doctors’ offices and waiting rooms, Shaw hasn’t stopped wondering how she can make the patient experience easier, not only for her sister, but for others, too. To that end, the former executive has started working to launch a nonprofit organization, More Moments More Memories Foundation, that will help patients pay for clinical trial expenses not covered by health insurance, such as hotel rooms and airfare. “With my sister, the clinical trial could be a two-year commitment,” Shaw pointed out before Whitford began treatment. “If she does well, she’ll be back in Philadelphia (from her home in St. Louis, Missouri) almost monthly for two years. Who can afford that, plus hotels, gas and food? What are these poor patients to do, and is there an avenue where we could help?”

The Road to Philadelphia

Whitford’s illness started with increasing back pain, a symptom that probably resulted from bones weakened and broken due to myeloma, but which went undiagnosed for three months. At the end of 2013, the married mother of two grown children, who is now also a grandmother, ended up in a hospital emergency room. Although skeptical that he would find anything wrong, a doctor tested her blood and returned with bad news. “You have a disease that’s cancer,” he told her. “It’s kind of like termites are eating your bones.” It was categorized as stage 3, the most advanced stage of myeloma.

Employed for years as a “lunch lady” at her local elementary school, Whitford had stayed on long after her own children had grown up, feeding a new crop of little ones each year. But as her symptoms progressed, she could no longer lift a box of food. Then, she could no longer work at all.

By the time she was diagnosed, Whitford was weak and sick, and was admitted to a hospital where she was given a combination regimen of the targeted proteasome inhibitor Velcade (bortezomib), the chemotherapy cyclophosphamide and the steroid dexamethasone. That led to an autologous bone marrow transplant followed by the immunomodulatory drug Revlimid (lenalidomide) to help keep the disease from recurring or progressing. But a year later, Whitford’s disease was in early relapse. A regimen of the relatively new drugs Kyprolis (carfilzomib), a proteasome inhibitor, and Pomalyst (pomalidomide), an immunomodulatory drug, helped for about six months. After that, she tried monoclonal antibodies Darzalex (daratumumab) and Empliciti (elotuzumab), but neither did much to stop the progression. To complicate matters, genomic testing revealed an FGFR mutation, indicating that Whitford’s disease was aggressive and high-risk.

Hope came in February, when Whitford met with investigators at the University of Pennsylvania and learned she was eligible for a small phase 0 clinical trial of CAR (chimeric antigen receptor) T cell therapy, which is in progress but no longer enrolling patients with relapsed or refractory myeloma (NCT02546167); the aim of phase 0 studies is to assess biomarkers. To employ this immunotherapy, doctors remove T cells — the cells that kill intruders in the immune system. In a lab, these cells are bestowed with the ability to find and disable an antigen that helps B cells mature (BCMA), and is associated with myeloma. These genetically engineered T cells are multiplied and then put back into the patients they came from. Specifically, the technique is known as CART-BCMA therapy.

Whitford’s T cells were harvested on June 16. On July 29, she was treated with high-dose Cytoxan IV chemotherapy, and her engineered cells were reinfused on Aug. 1-3. After that, her bloodwork looked healthier, and she was well enough to attend her sister Shelley Shaw’s wedding the first weekend in September, walking her down the aisle. More recently, however, the news has been more concerning. Whitford was treated for pneumonia, and then doctors found a tumor, or plasmacytoma, in her sinus cavity, for which she underwent radiation treatments.

In addition, her myeloma has progressed, Shaw says, so the next steps will involve keep her as strong as possible so that she can undergo an allogeneic stem cell transplant. Luckily, their sister, Shelley, is a 100 percent match, and will donate the stem cells Whitford needs.

“My younger sister was in the midst of planning a family with her new husband (she is 42), but will put that on hold until she donates,” Shaw says..

Taking Care of Business

The treatment experience has been intense for both patient and caregiver since the time Whitford received her T cell injections, says Shaw, who mainly takes care of Whitford whenever she’s on the East Coast; Whitford’s husband takes over when she’s at home in St. Louis.

Shaw and Whitford moved to Philadelphia during that time, staying for a month at the AstraZeneca Hope Lodge of the American Cancer Society so they could be close to Whitford’s doctors. That was helpful, because Whitford was admitted to the Hospital of the University of Pennsylvania for a few days in mid-August due to cold and cough symptoms that arose from a low white blood cell count due to the chemotherapy.

Beyond its proximity to the hospital, Shaw saw another advantage to staying at the Lodge. “It will be good to be with other patients like her, and other caregivers like me,” she predicted before arriving there.

Of course, in some ways, Shaw admits, she’s not at all like other caregivers. In fact, the company she headed until May is partnering with U Penn to run the trial Whitford has entered. When the partnership was forming, Shaw had the opportunity to meet Carl June, of U Penn’s Abramson Cancer Center, a pioneer of CAR T cell therapy who had published early results of a similar trial in children with blood cancer.

“I told him about my sister, and he said, ‘One day we’ll have a CAR T for multiple myeloma. If your sister ever needs it, call me.’ I did email him and asked if she could be assessed, and he sent an email to Dr. Edward Stadtmauer, section chief for hematologic malignancies at Penn.”

The connection was a lucky coincidence, but not a conflict of interest, “because she met all the criteria,” Shaw says of Whitford.

Shaw sees her relationship to the trial as similar to the ties people rely on when networking for jobs: “You still have to get it on your own merits,” she says, “but connections help.”

All in the Family

Family connections are crucial in caregiving, too, Shaw is learning.

The third sibling in her family, Shelley Shaw, 42, of Chicago, is also helping out with Whitford’s care.

Also in the pharmaceutical industry, she had been working for Baxalta but, with the company being purchased by Shire, was able to take a buyout package and temporarily put her career on hold.

“It will give her some time to help support us,” Shaw said before Whitford received her CAR T cell infusions. “In Philadelphia, I’ll stay for a month, and Shelley will help with my (8-year-old) son and the family, because the Hope Lodge only allows one caregiver and no children. Her husband will also come to care for her and give me a break.”

It’s a scenario that isn’t foreign to the family.

Back in 1996, when their mother was in the final stages of her fight against breast cancer, Whitford moved in with her, caring for her during her last weeks. Now, the cycle is continuing as Whitford’s sisters take care of her. “It’s something that runs in our family; it’s just what you do,” Shaw says.

It’s a dedication that Whitford appreciates.

"I asked her if she was sure about her decision,” Whitford says of Shaw. “Of course, I knew that, once she made the decision, no one could change her mind. I'm just very, very lucky to have her as a sister in my life."

The three sisters have a strong bond.

“Our dad died when he was only 67,” Shaw says. “After they were both gone, we had to get together and say, ‘How do we work now without parents?’ because they’re typically the glue of the family. We started having sister calls every Sunday, and it made a huge difference. We’re very close, and have gotten closer over the years.”

In fact, it was the values her parents passed along that made Shaw want to join the pharmaceutical industry in the first place. “We were always taught that the world is about giving to others, and the more you give the more you get in satisfaction,” she says. “The world wasn’t there for us.”

A Strong Foundation

In that vein, Shaw plans to move full steam ahead in establishing the More Moments More Memories Foundation, but that doesn’t necessarily mean that her next job will be running it.

“My goal is to ensure that more patients can access innovation, and to do that, I want to work with others who’ve done advocacy work before; it’s not about me, but about the patients,” Shaw says. “I already have a list of 20 people who have offered to help, or who’ve been in a similar situation and have said, ‘Let’s help you brainstorm.’”

Beyond the fact that her sisters will be involved, it’s too early to say exactly what the organization will look like, but Shaw has some ideas.

“One thing I found in pharma, and with my sister, is that it’s hard for patients to get access to innovation and the clinical trials they need. One reason is that they can’t afford to go to the cities where they are,” she says. “It’s hard for pharma to pay for that, because it can be perceived to be a kickback to directly pay patients. And health insurers don't pay; my sister called her payer and said ‘I’m in a clinical trial that could save my life, and it won’t require me thousands of dollars to stay in a hospital,’ and they still said: ‘No, we don’t pay for $150 hotel rooms.’”

The gist of More Moments More Memories will be to financially help patients through the clinical trials process by paying for attendant costs that aren’t funded by pharma or health insurers. The money given to clients could be provided through donations from private parties, pharma or local hotels and transportation companies, with the organization modeled after existing 501c3 patient advocacy organizations, Shaw says.

The effort is not surprising, given Shaw’s long interest in ensuring not just that useful medicines are explored and developed, but that patients can get access to them, Spurr says.

“When Christi was the head of the U.S. oncology business,” he recalls, “she challenged her drug development lead to find a way to bring clinical trials to patients even in the far reaches of this country. They developed a program called Signature that allowed clinical trials to be carried out in local oncology practices with streamlined processes and approaches that helped local oncologists enter into and offer their patients the latest in oncology compounds being researched. So, again, a tremendous example of Christi’s work to see that patients have access to technology that has the potential of extending life’s precious moments.”

The pharmaceutical industry — and companies in other fields — could further help patients and their caregivers by making it easier financially, and in terms of career stability, for its employees to temporarily leave their work to care for sick loved ones, Shaw suggests.

“I’ve received a number of messages from people who’ve done it or wished they could have, but didn’t, because they were very worried about what would happen with their career, or because they needed the income, Shaw says. “Companies that find a way to help people off and back on again will be winners in the future. Those are the kinds of companies people will want to work for.”

Will Shaw eventually be “back on again” within the pharmaceutical business? After helping her sister through the trial, she’ll consider that question.

“I would like to sit on a couple of boards, some philanthropic and maybe one or two for-profit, to see if I get a bid to be a CEO of a midsize or small company, or if I can add more value in the nonprofit sector,” she says. “My goal is to see what touches my heart, not just my mind.”