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Magic Johnson's HIV Story Offers Hope For Cancer Patients

This article is more than 7 years old.

Whenever I see my friend Dikla Benzeevi, I think of Magic Johnson. Benzeevi, a Los Angeles resident, has been living with metastatic breast cancer for 14 years. She is alive and thriving, as she calls it, far beyond what statistics predict.

Earvin “Magic” Johnson, the basketball legend, announced on November 7, 1991—25 years ago—that he had tested positive for HIV. What I remember about his televised news conference was feeling sad. I’d spent the previous eight years as a medical student and young doctor working with AIDS patients in New York City. At age 32, his condition seemed hopeless. I don’t think any of my colleagues then would have believed that Johnson would be alive today. Having AIDS, or just being infected with virus, was a death sentence.

When he began his journey as a patient, Johnson said he would become “a spokesman for the HIV virus.” His main goal then was to educate people about how the virus can be spread, getting tested, and practicing safe sex. He was optimistic in that TV clip: “I feel really good,” he said. “My wife is healthy. We’re going to go on.”

Today, Johnson is alive and a “beloved” person, according to Sports Illustrated. The former Lakers star offers frequent Twitter updates, runs a business, chairs the board of the philanthropic organization he founded in 1991 to promote education about HIV and treatment, speaks, interviews, travels, spends time with family including three children, throws parties to celebrate his 25thwedding anniversary with his wife, “Cookie,” or fundraises for Hillary Clinton.

Two big changes since Johnson’s HIV diagnosis have been the development of effective drug combinations and the ease of HIV testing. In March, 1987, the FDA approved AZT, the first drug for treating HIV. In September 1989, the agency approved DDI for patients who were resistant to AZT. The first protease inhibitor wasn’t approved until 1995. When Johnson received his diagnosis in 1991, there were no protease inhibitors or medication cocktails. Checking for HIV was cumbersome, so much so that the New York City Health Department reported a backlog due to an increase in testing three months after his announcement. Now, HIV testing is comparatively easy and fast, and effective combination drug treatments are available. In the United States, mortality from HIV peaked around 1995, just four years after Johnson’s announcement.

When I first met Benzeevi in April 2016, we were participating in a panel discussion at a Living Beyond Breast Cancer conference for people affected by metastatic disease. After the session ended, women with advanced disease lined up to speak with her. Benzeevi, a calm, slender woman with sharp features and a warm smile, nodded as she answered questions: “What treatments have you been on?” several asked; “Are you on a special diet?” I heard. “What’s your subtype?” and more.

Benzeevi was 32 years old when she received her breast cancer diagnosis in August, 2002. After her gynecologist advised evaluation of a breast lump, biopsy showed a hormone-sensitive, Her2-positive tumor. On scans, a spot lit up in her spine that proved to be cancerous; she had stage IV, metastatic disease. In the intervening years, she has had quite a few treatments including chemotherapy, radiation, hormone blockers and antibodies. Now at age 46, she organizes online patient groups, counsels peer patients in her community, travels and advocates, all while receiving weekly treatments.

Benzeevi appears to defy the odds. By doing so, she conveys hope to others who are living with metastatic breast cancer, and with other cancers. Because if you look at the most recent charts for life after a diagnosis of metastatic disease, as I have considered previously, the outlook seems bleak. But if you meet Benzeevi, you know that it’s possible, at least, for some people with advanced cases to thrive for a long time.

Benzeevi graduated from UC Irvine with a major in biology. She founded one of the first Facebook groups for metastatic breast cancer patients. Since 2004, she’s organized and participated in over 20 online peer patient networks. Since 2005, she’s volunteered with the Young Survival Coalition, an organization dedicated to supporting the needs of young breast cancer patients.

Like Johnson, Benzeevi is motivated to educate other patients in her community. In early 2006, Benzeevi and seven other young women with metastatic breast cancer appeared in an educational video produced by the Young Survival Coalition. “I’m the only one who is left from that video,” she told me.

Her enduring experience in peer patient networks has given her perspective on what’s changed since her diagnosis 14 years ago. “Social media has tremendously helped in reducing the sense of isolation and awareness about metastatic disease,” Benzeevi said. In 2006, she attended the first annual Metastatic Breast Cancer Network conference, held at Memorial Sloan Kettering Cancer Center. “I was so relieved to find other young women,” she told me.

“I think that people with metastatic breast cancer are staying around longer, and are likely to live longer with it,” she considered. “If those stats are outdated, let’s not see them anymore,” she added. “Still too many are dying too soon, and too many are suffering in treatment, or as a consequence of the treatments that exist.” 

“Sometimes I just feel good. The best times are when you forget, you don’t think about the cancer,” she said. What she hopes for the future "is for patients to live with even the most deadly forms of cancer as a chronic condition, with a normal life span and minimal effect on our quality of life.”

Benzeevi is not alone as an outlier. I’ve been writing and attending patient-oriented breast cancer meetings for six years. At each conference, I meet a few women who are living beyond ten years with well-documented, metastatic disease. Several breast cancer specialists with whom I’ve discussed this topic at oncology meetings have told me that in their practices they are seeing patients with advanced disease live for longer than expected. Some doctors now are studying the “tail” of survival curves.

Perhaps the statistics lag behind survival, and having metastatic cancer is no longer a death sentence in 2016. Currently, the most recent data included the National Cancer Institute SEER database and figures date from 2013. Many drugs have been approved since then, and in the few years preceding, that would impact survival curves. Given advances in cancer diagnostics and targeted medications—which have so far mainly been given singularly and in limited combinationscould it be that we're in a similar position for metastatic cancer in 2016 as for HIV 25 years ago?

Dikla Benzeevi in August, 2015 (photo credit: Jenny Grimes)

In the 1990s, we doctors were struggling with the long names of new anti-viral drugs. Today, there are so many promising anti-cancer agents, it’s hard to keep track. Since Benzeevi’s 2002 diagnosis, when Herceptin was a new drug, the FDA has approved over a dozen medications for metastatic breast cancer. Those include targeted therapies like Afinitor (Everolimus), Ibrance (Palbociclib) Kadcyla (Ado-Trastuzumab Emtansine) and Tykerb (Lapatinib), to name a few in a very long list. There are so many newly approved drugs and more in the pipeline, it’s hard to keep track.

There’s a reason why Vice President Biden and others have suggested we’re near a tipping point for curing many or most cancers. Precision medicine will involve a lot of trial and error. But there is nothing magical about it; these new drugs are real, based in science and match-able to specific tumors. The questions for oncologists is how to combine these drugs safely and effectively, and soon.

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