“For the past two weeks you have been reading about a bad break. Yet today, I consider myself the luckiest man on the face of the earth.”

— Lou Gehrig, retirement ceremony, Yankee Stadium, July 4, 1939.

June 2 — this Tuesday — is Lou Gehrig Day across Major League Baseball, honoring the New York Yankees slugger who died at age 37 from amyotrophic lateral sclerosis, a disease that affects nerve cells in the brain and spinal cord.

As the ALS Association explains, it is “a progressive disease in which a person’s brain loses connection with the muscles, slowly taking away their ability to walk, talk, eat and eventually breathe.”

Though the disease may manifest itself differently for different people (as documented on the website Her ALS Story, which supports women diagnosed before age 35 with ALS), most people with ALS contract the disease between the ages of 55 and 75, according to the Centers for Disease Control and Prevention. The average lifespan after diagnosis is two to five years.

Symptoms may first appear as muscle weakness in the arms and legs, which is what Gehrig experienced in 1938 and caused him to retire from baseball the following year after playing in 2,130 consecutive games over 15 seasons and performing feats of hitting that remain near the top of all-time MLB records.

Gehrig began his consecutive games streak on June 2, 1925; his record would endure until 1995, when it was surpassed by Cal Ripken of the Baltimore Orioles.

Baseball’s “Iron Horse” passed away on the same date in 1941, becoming the face and name of a disease diagnosed in about 5,000 people each year in the United States.

There is no known cure for ALS. Scientists estimate that 5% to 10% of all cases occur within families, but otherwise, there is little consensus on what mix of genetic and environmental factors may cause the disease.

In the meantime, there is progress on development of treatments that can prolong and improve the quality of life for ALS patients.

Fortunately, funding for ALS research has increased significantly over the past decade, due in no small part to consciousness-raising efforts by heroic activists and advocacy groups. Their story deserves to be told for many reasons, not the least of which is showing how politics affect the health of Americans for better and worse.

Ice Bucket Challenge

The link between ALS and Lou Gehrig has certainly raised public awareness, but promotion of ALS-related causes accelerated with the formation of advocacy organizations.

These include the ALS Association, the leading ALS advocacy group, established in 1985.

Among the early victories of ALS advocates was creation of the Defense Department’s ALS research program, a national ALS registry in the CDC and the Department of Veterans Affairs’ designation of ALS as a service-connected disease. That last action reflected findings that members of the armed services are more likely to develop ALS.

One catalyst for the political and fundraising success of ALS advocates was the 2014 Ice Bucket Challenge, a viral sensation in which people doused each other (or themselves) with ice water to stir up support for medical research. Though cold water challenges had existed on social media for several years prior, activists Anthony Senerchia, Pete Frates and Pat Quinn, young men with ALS, succeeded in having the public identify the stunt with the disease.

Initially raising $115 million for ALS research worldwide, the Ice Bucket Challenge has been issued annually by ALS organizations. A revival of the challenge was launched last year by advocates for mental health.

Frates, a former college baseball player and Boston Red Sox fan, was also a leader in efforts to get MLB behind the cause. Following the lead of individual teams such as the Philadelphia Phillies, whose association with the ALS movement goes back to 1984, all 30 clubs recognized Lou Gehrig Day by 2021.

By 2020 new organizations had joined the crusade, including I Am ALS (a patient-led nonprofit) and ALS United (a community-based network that broke away from the ALS Association in 2023).

The movement’s greatest legislative success came in December 2021 when President Joe Biden signed the Accelerating Access to Critical Therapies for ALS Act (“ACT for ALS”), which provided up to $100 million annually from 2022 through 2026 to support ALS research and treatments for neurodegenerative diseases such as ALS.

That bill passed the U.S. House and Senate almost unanimously, furnishing an all-too-rare example of bipartisan cooperation in Congress.

Currently, ACT for ALS is up for reauthorization. A bipartisan-sponsored bill was introduced and reported unanimously by a House committee, but full floor votes in the Republican-controlled House and Senate are yet to be scheduled.

Sadly, the ALS Association and related groups have not achieved their goal to “make ALS livable and cure it.” However, the ALS movement claims it has secured more than $1.6 billion in federal research funds since 2019. Given the competition for increasingly scarce government resources, that is a major political accomplishment.

A success story

The decadeslong campaign for ALS research is by no means the first or only drive to eradicate a terrible disease.

Though breast cancer cannot be called a rare disease — more than 321,000 new cases of invasive breast cancer are diagnosed in women annually — it was not until the feminist movement of the 1970s that concentrated efforts to combat the disease began. Those efforts were boosted by prominent figures such as the former child actress and diplomat Shirley Temple Black and first lady Betty Ford, who came forward to share their experiences with the disease.

Organizations devoted to breast cancer research and treatment formed, raising huge sums of money for research grants.

But as with ALS research, U.S. government funding has been critical. And in the case of breast cancer, it has been lifesaving.

Breast cancer mortality rates have decreased by 44% in the past 35 years. The five-year survival rate has jumped from 75% to over 90%, thanks to improved treatments and screening.

It is good to celebrate the successes of charitable giving, especially when they lead to discoveries that save many lives.

Still, critics argue that there are serious mismatches between medical research funding and the health needs of populations.

Research disparities

The priorities of for-profit pharmaceutical companies mean that rare diseases, which affect relatively few people, will not receive much attention. Those that do get research support are good at the political game.

Diseases affecting famous people such as Gehrig, or diseases with sponsors such as the late comic actor and filmmaker Jerry Lewis, who raised more than $2 billion for muscular dystrophy, have political and financial advantages over diseases that do not have celebrity firepower.

This is not to criticize the fundraising prowess of the breast cancer movement or the millions of women who have benefited from innovations in prevention and treatment, but in the zero-sum game of research funding, more deadly diseases and their sufferers have been left behind.

For example, nearly twice as much National Institutes of Health money is spent on breast cancer research than on lung cancer, even though lung cancer kills almost-three times as many people each year.

A study published in 2025 found that U.S. federal cancer research funding from the National Institutes of Health and Congressionally Directed Medical Research Programs “disproportionately favors cancers with high incidence rather than high mortality, leaving cancers like lung, liver, and colorectal consistently underfunded,” the journal Targeted Oncology explained. “The analysis also found that cancers more prevalent among Black patients are systematically underserved.”

There may be reasons other than politics for why some cancers receive less funding support. For instance, the connection between lung cancer and smoking may lead the public to blame patients for their condition (even though 10% to 20% of lung cancers occur in people who never smoked or smoked fewer than 100 cigarettes in their lives). Or research lines on some diseases may be more promising than on others.

Of course, nobody said that American health care is efficient or effective for all. The U.S. health system is unique among high-income nations for spending the most per capita while delivering worse health outcomes and restricting access to care.

Research under Trump

What is most disturbing now are how political and ideological preferences coming from the Trump administration are affecting medical and health research.

Unilateral actions by Secretary of Health and Human Services Robert F. Kennedy Jr. imposed heavy cuts on the National Institutes of Health, the Food and Drug Administration and the CDC. In particular, grants awarded by the National Institutes of Health this year are down by more than half.

Hunting for “woke” research, Elon Musk’s Department of Government Efficiency summarily terminated federal grants for research into HIV/AIDS and conditions affecting women, transgender people and specific racial or ethnic groups.

Top universities such as Harvard, where protests against Israel’s actions toward Palestinians in Gaza have taken place, have had grants delayed or terminated by the National Science Foundation and other agencies for alleged violations of anti-discrimination law.

The unpredictability of federal funding has discouraged young medical scientists, who are either leaving the profession or traveling to other countries to do their work.

Research funds are being diverted into RFK Jr.’s spurious campaign to discredit safe and effective vaccines.

All these actions will make competition for federal research dollars fiercer, giving those who are aligned with administration priorities a big advantage.

Happily, Congress has resisted the Trump government’s proposals for more severe cuts in scientific research.

And, we have not reached the point, portrayed in the 1973 Woody Allen sci-fi comedy “Sleeper,” where scientists of the future have declared that smoking, cream pies and chocolate are good for us.

RFK Jr., though, promotes both tanning and the regular consumption of steak. So we’re getting there.

E. Fletcher McClellan, Ph.D., is professor of political science emeritus at Elizabethtown College; Bluesky: @mcclelef.bsky.social.