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VANQUISHING INDIFFERENCE

Lessons from the Fights Against Polio, HIV/AIDS, and Breast Cancer

Until we get our acts together, we are as good as dead.

—Larry Kramer, playwright and AIDS activist¹

ON THURSDAY, MAY 6, 1954, ROGER BANNISTER, A TWENTY-FIVE-YEAR-OLD medical student, finished rounds at St. Mary’s Hospital in London. He then boarded a train to Oxford, lunched on a ham and cheese salad at a friend’s house, and headed over to the Iffley Road track. At 4:30 p.m. he met his fellow amateur all-star teammates to race against the University of Oxford.² There, on a windy and rain-sodden day, he decided to attempt the unprecedented—to run a mile in less than four minutes. “I felt if I didn’t take the opportunity when the chance presented itself,” Bannister said, “I might never forgive myself.”³

In front of 1,200 people in overcoats who had assembled to watch the meet on the quarter-mile track, he opened the race fast. Paced by two of his teammates, Bannister hit his stride. “I was relaxing so much that my mind seemed almost detached from my body,” he said.⁴ With rising applause from the crowd, momentum was building.

He ran the first three laps in three minutes, one second. It was fast but not fast enough, and Bannister knew it. He would have to find new speed on his last lap. He described the home stretch: “Time seemed to stand still. The only reality was the next 200 yards of track under my feet. I felt at that moment that it was my chance to do one thing supremely well.… My body must have exhausted its energy, but it still went on running just the same.… With five yards to go, the finishing line seemed almost to recede. Those last few seconds seemed an eternity. The faint line of the finishing tape stood ahead as a haven of peace after the struggle.”⁵

After crossing the finish line, Bannister collapsed almost unconscious into the arms of racing staff. The crowd became silent. Did he break the four-minute barrier? The answer came from the track’s announcer. Over a crackling speaker, he said, “Ladies and gentlemen, here is the result of Event No. 9, the one mile. First, No. 41, R.G. Bannister, Amateur Athletic Association and formerly of Exeter and Merton Colleges, Oxford, with a time that is a new meeting and track record and which, subject to ratification, will be a new English native, British national, British all-comers, European, British Empire and world’s record. The time was 3…” The ecstatic crowd drowned out the rest.⁶

Bannister was now the fastest runner in the world. But later that same year, at the peak of his racing career, Bannister retired to chase a new goal. He started training as a neurologist. Over the next forty years, he edited a neurology textbook, published important academic papers, and cared for countless patients, including many with Parkinson’s.⁷ In 1975, Bannister was knighted by Queen Elizabeth II.

In 2011, the former runner started having trouble walking. He was diagnosed with Parkinson’s disease. Seven years later, at age eighty-eight, Sir Roger Bannister passed away peacefully in Oxford, England.⁸

During his lifetime, Bannister witnessed society confront and slow at least three pandemics: polio, HIV, and breast cancer. The lessons from these efforts can guide our response to the wave of Parkinson’s that not even the great Roger Bannister could outrun.

POLIO: HALTING A PANDEMIC

Polio is an infectious disease caused by the polio virus. In the setting of poor hygiene, it is transmitted by mouth via contaminated water or food. It can result in weakness and even difficulty breathing. In the early twentieth century, the disease disproportionately affected children and terrorized families. That all began to change a hundred years ago.

In 1921, Franklin Delano Roosevelt—who had just lost his bid to become vice president—attended a Boy Scouts festival near his family estate in Hyde Park, New York. There he was photographed walking unassisted for the last time.⁹ Roosevelt then traveled to his family’s home off the coast of New Brunswick, Canada, where he sailed, helped put out a brush fire, raced his children, swam across a freshwater lake, dipped in the freezing waters of a local bay, and then developed a strange feeling of “numbness, deep muscle ache, and frightening chills.”¹⁰ Doctors later diagnosed him with polio.¹¹ Although some recent reports question the accuracy of the diagnosis, his ensuing paralysis helped define the future president and the fate of the disease.¹²

While his paralysis was hidden from the public, Roosevelt was focused behind the scenes on regaining strength and ending polio. Heartened by the buoyancy of the water in Warm Springs, Georgia, he bought the resort there and converted it into a foundation to help victims of polio. Later, in 1938, as president, Roosevelt announced the formation of the National Foundation for Infantile Paralysis. The group become the largest voluntary health organization of all time.¹³ In 1954, for example, it raised more money than the American Cancer Society, American Heart Association, and National Tuberculosis Association combined.¹⁴

The foundation revolutionized philanthropy through novel approaches to fund-raising, many of them led by the group’s president, Basil O’Connor. Among the foundation’s earliest efforts was lining up Hollywood celebrities, such as the entertainer Eddie Cantor, to support the cause. For a 1938 campaign, Cantor suggested a “March of Dimes,” a campaign that would involve asking people to send their dimes directly to the President at the White House.¹⁵ Even though much of the foundation’s staff opposed the idea, O’Connor asked President Roosevelt, who replied, “Go ahead.”¹⁶

With the President’s endorsement, Cantor used his popular radio show to launch the March of Dimes effort to “enable all persons, even the children, to show our [President] we are with him in this battle.” Jack Benny, Bing Crosby, and the Lone Ranger soon joined the cause and made their own appeals to support the March of Dimes.

The White House expected a modest increase in mail. What arrived instead was a tsunami. Ira R. T. Smith, who worked in the White House mail room for more than fifty-two years, recalled, “Two days later, the roof fell in—on me. We had been handling 5,000 letters a day at that time. We got 30,000 on the day the March of Dimes began. We got 50,000 the next day. We got 150,000 the third day. We kept on getting incredible numbers, and the Government of the United States darned near stopped functioning because we couldn’t clear away enough dimes.”¹⁷

In all, citizens mailed 2.7 million dimes, countless dollar bills, and numerous checks to the White House. The March of Dimes eventually became the official name of the foundation.¹⁸

The call for dimes was not the foundation’s only campaign. The group collected money in movie theaters, hosted fashion shows to raise more cash, and created the first “poster child,” who would become the face of the illness on countless posters and pamphlets that blanketed the country in the decades to come.

The foundation also launched a first-of-its-kind Mothers’ March on Polio to raise money. On a January evening in 1950, crowds of women, many from minority groups, took to the streets of Phoenix, Arizona. Leading up to that night, a local chapter of the foundation had placed newspaper, radio, and billboard ads and passed flyers out to children at school. The message was simple: “Turn on Your Porch Light! Help Fight Polio Tonight!” And so for one hour, volunteers went door-to-door, collecting donations from contributors who signaled their willingness to give by turning on their porch lights.¹⁹ The city “came alive. Sirens wailed, car horns sounded, and searchlights swept the sky.”²⁰

The donations helped care for people with polio. From 1938 to 1955, the foundation spent approximately two-thirds of its total budget, or $233 million, on patients. Most of it went to pay the individual medical bills of those affected because in 1940 less than 10% of the country’s population had health insurance.²¹ The foundation’s vision was that “no victim of infantile paralysis, regardless of age, race, creed or color, shall go without care for lack of money.” To fulfill that promise, the foundation provided aid to more than 80% of US patients with polio.²²

Even as its victims were being cared for, the pandemic continued its sweep. By the 1950s, polio was generating so much anxiety that people started staying away from gathering places that gave the virus more opportunity to spread. Churches and swimming pools closed. In 1952, Americans feared polio more than anything except nuclear war.²³ That year, polio had its worst outbreak in the United States, affecting 58,000 individuals, paralyzing 21,000, and killing 3,000.²⁴

Treatment options were few. In the early stages of the disease, when muscles in the chest became paralyzed, iron lungs—giant metal cylinders in which patients had to lie down—assisted with breathing by regulating air pressure. At the height of the pandemic, dozens of children in iron lungs filled hospitals throughout the country.²⁵ They spent day after day lying encased in these tubes with only their heads exposed. A mirror above their eyes allowed them to see more of their surroundings. After several weeks most would recover enough to breathe on their own, but some people ended up relying on iron lungs for years.²⁶ Obviously, iron lungs were not the answer to polio.

Vaccines, which had recently become available for tetanus, diphtheria, and pertussis, offered hope for a better solution. To develop one, researchers first had to identify the cause or causes of polio. They found that multiple strains of a polio virus were responsible for the disease. With this information, Drs. Jonas Salk and Albert Sabin led efforts to make a polio vaccine a reality.

By 1953, Salk had developed a vaccine containing the dead virus, which was ready to be tested widely. More than 1.5 million children were enrolled in what was “among the largest and most publicized clinical trials ever undertaken.”²⁷ In 1954, over 600,000 children from across the country, from rural and urban areas, African American and Caucasian, wealthy and poor, participated in the trials. The vaccine worked, and in 1955, it was adopted widely in the United States.

In five years, polio cases dropped tenfold from the peak of 58,000 in 1952 to 5,600 in 1957. When famed reporter Edward Murrow asked Salk who owned the patent on the polio vaccine, he replied, “Well, the people, I would say. There is no patent. Could you patent the sun?”²⁸

In 1961, six years after Salk’s injection, Sabin developed a weakened live virus vaccine that could be swallowed and thus administered more easily. This new vaccine enabled mass-immunization efforts worldwide that to this day have reached hundreds of millions, if not billions, of children.²⁹ Thanks to generous philanthropic support, determined scientists, and broad societal engagement, polio today is close to joining smallpox in the dustbin of diseases that humans have eradicated from earth.³⁰

HIV: A NEW BREED OF ADVOCACY

On July 3, 1981, the New York Times ran the headline “Rare Cancer Seen in 41 Homosexuals.”³¹ Eight of the men, according to the article, died less than twenty-four hours after they were diagnosed.

They had been infected with what researchers later identified as the previously unknown human immunodeficiency virus (HIV). Forty years after the polio epidemic, this new virus now threatened to kill millions around the world. It attacked the immune systems of those it infected. Over time, their immune cells became so damaged that it was difficult for them to fight off infections and cancer. This advanced stage of the disease is called acquired immunodeficiency syndrome, or AIDS.

FIGURE 1. An example of AIDS educational materials, 1980s.

Yet, in just fifteen years, thanks to unprecedented activism and huge leaps in science, the fatal condition became a treatable one. And a cure is no longer inconceivable. In 2019, for the second time someone who had been infected with HIV was reported to be free of the virus.³²

At its peak in 1997, 3.5 million people per year were diagnosed with HIV globally, and in 2005 AIDS was killing 2 million people annually.³³ In contrast to Roosevelt’s leadership against polio, the federal response to HIV in the 1980s moved from ignorance to silence to blaming the victims. As just one example in 1982, President Ronald Reagan’s press secretary joked about AIDS during a press briefing and said that he had not heard the president express concern or “anything” about the emerging public health crisis.³⁴

Bold, determined activism rose to fill the void. An early and sustained focus of this engagement was prevention. When HIV was first reported, little was known about it other than its association with homosexual men in the United States. With no help from outside, the gay community sought to protect itself. Working with a few researchers, the community identified practices that were linked to the spread or transmission of the disease. Once sexual contact was identified as a risk, gay bathhouses were eventually closed, sexual practices changed, and abstinence increased. Education campaigns—posters adorned gay bars and city streets—led to the widespread use of condoms, which prevented transmission of not only HIV but also many other sexually transmitted diseases (Figure 1).³⁵ The gay community’s efforts, radical at the time, were responsible for preventing the spread of HIV to millions around the world.

Today, prevention remains the cornerstone of the continued fight against HIV. The same medications that are used to treat someone with HIV can now be used to block its spread. These drugs help keep HIV from passing from mothers to their children and decrease the risk of transmission to uninfected partners by 96%.³⁶ The campaign to prevent HIV has been so effective that the number of new individuals infected with the virus has decreased for the last twenty years, deaths have fallen for the last ten, and the survival rate has increased for the past thirty.³⁷

Early on, people with HIV/AIDS could not receive proper care because of who they were. Polio had primarily affected children. In the United States, HIV had mostly infected homosexual men. Even rising death tolls could not quell the rampant prejudice. During the early years of the epidemic, few doctors were willing to offer care, and even fewer were knowledgeable about the disease.³⁸ Many hospitals, including some of the most prestigious in the country, refused to admit those with HIV.³⁹

The community was left on its own to suffer from and fight what was thought to be its disease. Its members also had to care for themselves. Buddies were assigned to everyone affected to “help them get to their appointments, pick up their prescriptions… walk their dog… do grocery shopping for them, [and] change their bed.”⁴⁰

The first treatment for AIDS was still years away. But patients were desperate to try anything. In response, AIDS activists ran their own pharmacies out of churches. They produced their own experimental therapies, imported antiviral drugs from other countries, and distributed a wide range of medications to their peers. They served tens of thousands of customers. For those who could not reach or afford a hospital, friends and family members offered up their own homes for the sick. In essence, the community created its own shadow health-care system.⁴¹

Although the AIDS community initially lacked a face for the disease, that would soon change. In 1985, Rock Hudson, beloved leading man of Hollywood and a friend of President Ronald and First Lady Nancy Reagan, revealed to a shocked public that he had AIDS. The fact that Hudson, the epitome of masculinity, could suffer such a fate made the disease far more socially acceptable.

One year later, thirteen-year-old Ryan White helped people realize that anyone could become infected. But he still faced vicious ignorance. He contracted HIV from a blood transfusion to treat his hemophilia, but he was barred from attending his middle school and faced immense prejudice. “People said that he had to be gay, that he had to have done something bad or wrong, or he wouldn’t have had it,” his mother said.⁴²

The family eventually moved to another town in Indiana where Ryan was welcomed into the local school. His case led to far greater public and federal support for research and care, including legislation signed by President George H. W. Bush. The Ryan White Act, which provided $220 million to increase access and improve treatment for people with HIV/AIDS, was passed in 1990, several months after Ryan died. He was eighteen.⁴³

But widespread indifference is not undone so easily. In 1987, Cleve Jones was doing his part. Jones was a protégé of Harvey Milk, the pioneering San Francisco politician who had been assassinated nine years earlier. At a candlelight march in San Francisco, Jones asked participants to write the names of friends and loved ones who had died of AIDS on cardboard placards. Many of those named had not received a proper memorial service. Some people had been abandoned by their families; for others, funeral homes had refused to offer services. Jones took the signs, taped them together, and hung them from the San Francisco Federal Building. The prototype for the AIDS Memorial Quilt was born.⁴⁴

Four months later, on October 11, 1987, 500,000 people gathered in Washington, DC, to see the football-field-sized AIDS Memorial Quilt displayed on the National Mall. The quilt contained 1,920 fabric panels, each approximately the size of a grave, commemorating the life of someone who had died of AIDS.⁴⁵ David France, author of How to Survive a Plague, recounts the day:

From blocks away we could hear the dull cadence of a lone female voice reciting the names of the men and women whose elegies were stitched into a cloth tribute called the AIDS Memorial Quilt.… We stood on the edge of the massive field listening to muffled sobs around us as a platoon of pallbearers, dressed uniformly in white, unfolded great colorful panels and slowly lifted them into their place on the grid. There, beneath the doleful roll call of names, they silently tied the panels together with ribbons.… The speaker paused after each name, and you could sometimes hear combustions of grief from their loved ones roll across the meadow.⁴⁶

One year later, the quilt had grown to include over 8,000 panels and was displayed on the Ellipse in front of the White House. By 1996, nine years after Jones started assembling his memorial, the quilt covered the entire National Mall. Today, the quilt is shown at exhibits throughout the United States and remains the largest community art project in the world.⁴⁷

The quilt debuted several months after the Food and Drug Administration (FDA) approved AZT, the first treatment for AIDS. It had been six years since that New York Times headline about the rare cancer in homosexual men, and millions were now infected. Patients—and the wider, terrified public—were desperate for some kind of therapy. The FDA, facing enormous pressure, had fast-tracked approval of the drug in a record twenty months. AZT was originally developed as a cancer drug, and in a rushed clinical trial, it reduced the risk of death from AIDS.⁴⁸

When AZT came on the market, AIDS advocates accused the manufacturer of profiting off a vulnerable population. It cost $8,000 a year, the equivalent of $17,000 today.⁴⁹ AIDS disproportionately affected individuals with limited financial means. Many had no health insurance. Some who did frequently became too sick to work and consequently lost their income and health insurance when they were needed most. Activists wanted to ensure that the entire community, not just the wealthy or the well insured, would benefit from new therapies.

Peter Staley, an investment banker with HIV, had become involved in ACT UP, the radical protest organization that began in New York City and whose motto was “Silence = Death.” To protest the cost of AZT, Staley and his fellow activists barricaded themselves inside the national headquarters of Burroughs Wellcome, the pharmaceutical company that made AZT. Then, months later, Staley and his friends dressed in suits and entered the New York Stock Exchange. There, they chained themselves to a balcony above the trading floor, unfurled a banner that read, “Sell Wellcome,” and drowned out the opening bell with air horns. Within days, Wellcome had lowered AZT’s price by 20%.⁵⁰

AZT, however, was not enough. After an initial response, AZT lost its effectiveness. Additional treatments were needed.

The community quickly grasped that for new drugs to be developed, it would have to continue to pressure government agencies. In 1988, ACT UP orchestrated a carefully designed plan to occupy the FDA’s headquarters. In the lead-up, the group prepared a forty-page handbook for anyone interested in participating, educated members on the regulatory process, and gave newspaper reporters and TV stations advanced notice of what was to come. When the appointed day arrived, activists stormed the FDA’s building in Rockville, Maryland, shutting it down with hundreds of protestors.⁵¹ Banners reading, “We Die—They Do Nothing,” covered the campus and the building’s facade, and according to the late writer and professor Douglas Crimp, “[Demonstrators] staged one piece of theater after another as the television cameras rolled.”⁵²

After the successful demonstration at the FDA, that federal agency, along with the National Institutes of Health (NIH), began listening to activists. Their input and thoughts on clinical trial design were solicited, followed, and incorporated into future studies.⁵³ NIH funding for HIV/AIDS research increased, and today the agency spends more on HIV annually—$3 billion—than on any other single condition.⁵⁴

This activism, increased research funding, and eventually new therapies transformed the fate of those with HIV. The success of the HIV/AIDS movement offers a key lesson for drug development and access. The immense public health gains have not stifled innovation or profits. From 2000 to 2018, the FDA approved thirty-one drugs for HIV.⁵⁵ Along with these new therapies have come profits. During roughly the same period, pharmaceutical companies including Bristol-Myers Squibb, Gilead, and GlaxoSmithKline (with which Burroughs Wellcome merged) earned $200 billion in sales from HIV drugs. Profits quintupled from less than $5 billion to $25 billion.⁵⁶

Five years into the epidemic, these successes were not even a dream. Some elected officials remained impervious to the ongoing tragedy. Senator Jesse Helms ardently opposed using federal funds to study HIV/AIDS. He voted against the Ryan White Act and refused to speak to Ryan’s mother even when he was alone with her in an elevator. He claimed, “There is not one single case of AIDS in this country that cannot be traced in origin to sodomy.”⁵⁷

Peter Staley, the investment banker activist, had had enough.⁵⁸ He was upset that the senator had gotten a pass. Staley said, “One of the best tools an activist can use is humor. If you get folks laughing at your target’s expense, you diminish his power. I wanted the country to have a good laugh at Helms’ expense. I wanted his fellow Senators to have a little chuckle behind his back. And I wanted Senator Helms to realize that his free ride was up—if he hit us again, we’d hit back.”⁵⁹ So Staley and seven fellow agitators from ACT UP came up with a plan to rectify the situation: put a giant condom over Senator Helms’s home. After locating his house in Arlington, Virginia, and measuring its dimensions, the group sent the specifications to three companies in California that specialized in custom-made inflatables like those used in grand openings for shopping malls. They chose the company that offered the lowest price.⁶⁰

The activists planned out every step of the process and assigned each team member a role, from operating an air blower on the ground to handling questions from the media. Then, after ensuring that the home was empty, they climbed up ladders to the senator’s roof, hauling with them a large duffle bag. From it, they unfurled the bespoke contraceptive over the house. It read, “A condom to stop unsafe politics. Helms is deadlier than a virus.”⁶¹ A week later, the senator complained about the act on the Senate floor, but according to Staley, “Helms never proposed or passed another life-threatening AIDS amendment.”⁶²

The might of the AIDS activists and the change they wrought have reverberated far beyond the borders of the United States. Today, 79% of people worldwide who know that they are HIV-positive have access to effective therapies; 81% of people who receive treatment have undetectable levels of the virus in their blood.⁶³ The United Nations aims to ensure that, by 2020, 90% of the world’s diagnosed population has access to antiretroviral treatment and for 90% of them to have suppressed the virus.⁶⁴ In forty years, advocates transformed an unknown, fatal illness into one of the most treated conditions in the world.

BREAST CANCER: ALLEVIATING STIGMA

Like HIV, breast cancer used to have an enormous stigma attached to it. In the face of a wave of breast cancer, a new form of activism, one that has found far greater social and even corporate acceptance, has emerged. The result is heightened awareness and support for a disease that less than fifty years ago was rarely discussed.

In the fall of 1974, seven weeks after the resignation of President Richard Nixon, First Lady Betty Ford broke the seal, telling the nation and the world that she had breast cancer. As Roosevelt had, the First Lady gave both a face and a voice to a modern epidemic.⁶⁵ Ford’s disclosure was met with compassion, not scorn. More than 50,000 people, including many with breast cancer, mailed her letters.⁶⁶

Speaking of her illness, Ford said, “There had been so much cover-up during Watergate that we wanted to be sure there would be no cover-up in the Ford administration.”⁶⁷ In the wake of Ford’s courage, Happy Rockefeller, wife of Vice President Nelson Rockefeller, soon sought testing and was found to have breast cancer. She too shared her diagnosis with the country. American women were encouraged to perform self-examinations and pursue diagnostic testing.

The impact of these two voices was huge. With screenings up, the actual number of new diagnoses of breast cancer in the United States soon increased 15% and was termed the “Betty Ford blip.”⁶⁸ Ford said, “[The] fact that I was the wife of the President put it in headlines and brought before the public this particular experience I was going through. It made a lot of women realize that it could happen to them. I’m sure it saved at least one person—maybe more.”⁶⁹

Before the First Lady’s public disclosure, women had already been working to raise awareness of breast cancer. In 1973, childhood movie star Shirley Temple Black became the first public figure to write about her experience with the disease. The title of her article for the women’s magazine McCall’s was “Don’t Sit Home and Be Afraid.”⁷⁰

Even after Betty Ford’s galvanizing admission, there was still work to be done. Dr. Audre Lorde, the poet and feminist, was diagnosed with breast cancer in 1978. She railed against the prevailing paternalism exemplified by her physician, who told her, “If you do not do exactly what I tell you to do right now without questions, you are going to die a horrible death.” Following Lorde’s mastectomy, another doctor repeatedly noted her “obese abdomen and remaining pendulous breast.”⁷¹ In her book The Cancer Journals, Lorde criticized oppressive social views of the disease, which had lingered. Silence on the subject was, as it would be for the AIDS activists, unacceptable, for, she wrote, “silence has never brought us anything of worth.”⁷²

When Nancy Brinker’s sister, Susan, was dying of breast cancer in 1981, she decided she could not keep quiet either. Nancy promised her sister that she would do whatever she could to end the pain and hopelessness of having breast cancer. A year later, and two years prior to her own diagnosis of breast cancer, she founded the Susan G. Komen Breast Cancer Foundation.⁷³

Today the foundation’s signature fund-raising event, the Susan G. Komen Race for the Cure, draws nearly 1 million participants in 140 events over four continents.⁷⁴ Since 1982, the foundation has raised awareness and nearly $1 billion for breast cancer research.⁷⁵ Only the US federal government has spent more.

A decade later, Charlotte Haley, a sixty-eight-year-old housewife living in a sprawling suburb of Los Angeles, picked up her own megaphone. Both her older sister and her daughter had been diagnosed with breast cancer in the 1980s. Haley was frustrated by the lack of progress against the disease, especially the scarcity of funding for prevention.

So she started a grassroots campaign in her dining room. There she began making little loops out of peach-colored ribbons. She packaged five of them together and attached a postcard with a simple message: “The National Cancer Institute’s annual budget is $1.8 billion, only 5% goes for cancer prevention. Help us wake up legislators and America by wearing this ribbon.” She left them in doctors’ offices, handed them out in grocery store parking lots, and mailed them to prominent women, including former First Ladies.⁷⁶ Her husband worked extra hours to pay for the photocopying, ribbons, and postage. She eventually made 40,000 of them, but Haley refused to accept financial support, returning any checks that she received and telling the donor to give the money to cancer research instead.⁷⁷

Haley’s efforts began to draw attention from the media, including the Los Angeles Times. Soon she received a call from the editor of Self magazine, who wanted to use the peach ribbons to promote breast cancer awareness in its pages. Working with the magazine, Estée Lauder also planned to distribute the ribbons at the company’s cosmetic counters throughout the country. Haley said, “No, you’re going to commercialize it. That’s making money off of somebody else’s pain and suffering, and I’ve been through that with my sister and daughter, and we just can’t do that.” Rebuffed, Self magazine consulted with its lawyers and considered its options. The publication settled on a different color: pink.⁷⁸ In 1992, Estée Lauder distributed 1.5 million pink ribbons along with instructions on how to perform a proper breast self-exam.⁷⁹

Today, activists have delivered on their promise to change how we think about and treat breast cancer. The shame tied to the condition has been erased. The NIH spends over $700 million annually on breast cancer research, and new treatments are being developed.⁸⁰ Breast cancer diagnoses have plateaued, and five-year survival has increased to 90%.⁸¹

THE CAMPAIGNS AGAINST POLIO, HIV, AND BREAST CANCER HAVE many lessons for us as we take on Parkinson’s. Polio was eradicated only with presidential leadership and extensive community engagement that included children. Creative and novel campaigns first funded care for those in need and then financed research to identify the causes of the disease. Effective treatments (in this case, vaccines) were then tested on unprecedented numbers of volunteers at risk of developing the disease.

For HIV, activism overcame ignorance, indifference, and prejudice. While the means were provocative and even disturbing, the ends were enduring. Those with the disease now have a voice in the conduct and funding of research, a voice that needs to be amplified. Bureaucracies are more accountable to their funders and beneficiaries, but that accountability needs to increase. Care and treatment were extended in large measure to all those with the disease, an effort that needs to expand. While more work remains, a global threat to public health was met when those affected refused to be silent.

Progress against breast cancer began when brave, high-profile women were willing to confront the social stigma associated with the disease and share their stories. This led to ordinary women taking extraordinary steps to raise awareness and funds for research into the disease. Those funds have facilitated early diagnosis and new treatments for the condition. More work remains, however, to prevent breast cancer.

In all cases, activists refused to accept that these diseases were inevitable. As we face the new challenge of Parkinson’s, these activists have taught us how to overcome indifference and use our voices. Based on their experiences, we must form a “PACT” to end Parkinson’s. This PACT will (1) prevent the disease, (2) advocate for policies and resources, (3) care for all affected, and (4) treat the condition with new and more effective therapies.