In late 2015, Yan Valle, CEO of the Vitiligo Research Foundation (VRF), unearthed what many in the vitiligo community had long dismissed as a myth: the National Vitiligo Control Act. For years, whispers of its existence circulated—a bill introduced in Congress during the 1970s to address vitiligo, a misunderstood and stigmatized skin condition. Yet details were scarce, and like the condition itself, the bill had faded into obscurity.

The Forgotten Bill: How the National Vitiligo Act of 1975 Resurfaced

Determined to uncover the truth, Valle went straight to the source: the Library of Congress. There, he found not just one but two related bills introduced by Maryland Congressman Parren J. Mitchell, who personally battled vitiligo. The legislative journey began with H.R. 5264, introduced on March 20, 1975, during the 94th Congress. This bill sought to amend the Public Health Service Act to fund research and public education on vitiligo but failed to advance. Undeterred, Mitchell reintroduced it as H.R. 3520 (identical to H.R. 3578) on February 16, 1977, during the 95th Congress; shortly thereafter, it was referred to the House Committee on Interstate and Foreign Commerce. Despite garnering bipartisan support from 12 Democrats and three Republicans—a notable achievement for its time—this groundbreaking legislation did not pass.

Note: Congressional bill numbers restart every two years. Thus, while there are other bills with the number H.R. 3520, this particular one belongs to the 95th Congress, which met from January 4, 1977, to October 15, 1978.

These bills were revolutionary for their time, proposing funding for research into vitiligo diagnosis and treatment, public education about its inheritance patterns, and grants for innovative projects addressing the disease. Yet despite their potential impact and bipartisan support, they failed to gain enough traction and were quietly shelved.

When Valle finally obtained copies of these legislative documents in late 2015, his first call wasn’t to a politician or journalist—it was to Valarie Molyneaux, President of VITFriends. “She understood its emotional weight,” he later reflected. “This wasn’t just policy. It was living proof that unsung heroes had been quietly fighting for decades.” Valarie recalls first hearing about the Act from a vitiligo rapper; at that time, however, it seemed more like an urban legend than a fact.

Ten years after Valle’s discovery—and fifty years after Parren J. Mitchell’s first battle on Capitol Hill—the story is as much about the people who resurrected the Act as it is about the legislation itself. Their personal struggles and relentless determination transformed a forgotten congressional document into a rallying cry for millions.

The 2016 Rally: A Turning Point in Advocacy

The rediscovery of the National Vitiligo Act became a cornerstone of advocacy at the World Vitiligo Day rally in Washington, D.C., in June 2016. Led by Valarie Molyneaux and her team from VITFriends, this milestone event brought over 300 attendees to Capitol Hill. Collaborating with Natasha Pierre McCarthy of Vitiligo Bond and Stella Pavlides of AVRF and other contributors, Molyneaux championed reintroducing this ‘forgotten’ legislation to Congress.

The rally did more than resurrect the National Vitiligo Act; it marked one of the largest gatherings of vitiligo advocates in U.S. history and brought unprecedented attention to critical issues faced by those living with vitiligo. Governors from 18 U.S. states issued proclamations in support of World Vitiligo Day that year, marking a significant step toward raising public awareness.

The timing was perfect—World Vitiligo Day was already gaining global momentum as an annual event on June 25th since inception in 2011, even earning recognition on the UN Calendar of Disability Events in July that year before being removed in subsequent revisions.

A New Attempt: October 17th and Legislative Challenges

On March 21, 2017, Congressman Hank Johnson introduced an updated version of the National Vitiligo Awareness Day bill H.Res. 213, proposing October 17th as the official date. This choice aligned with Bullying Awareness Month to highlight how children with vitiligo are disproportionately targeted. 

Community leaders, including Natasha Pierre McCarthy and Stella Pavlides, along with organizations like the Global Vitiligo Foundation (GVF), passionately advocated for the bill. Their goal was to raise awareness about vitiligo’s psychological toll and promote comprehensive medical and mental health support. However, the short-sighted decision sparked debate within the community as it diverged from World Vitiligo Day on June 25th—a globally recognized date since 2011.

Legislative feedback shared by McCarthy revealed the challenges of linking the bill to June 25th. A leaked 2016 email from a congressional office noted, “Q4 might align better with legislative schedules and Pharma advocacy cycles.” Although Congressman Johnson acknowledged Michael Jackson’s legacy—central to the choice of June 25th date—rumors circulated that the summer date was considered less “business-friendly” and lacked sufficient “marketability.”  

Despite bipartisan support from ten Representatives and endorsements from prominent advocates, H.Res. 213 did not progress beyond committee review—likely due to its symbolic nature as a ‘simple resolution,’ which often places such measures lower on legislative priorities compared to pressing issues like healthcare reform.

The decision to separate from the global celebration remains a point of contention, reflecting deeper power dynamics and unresolved tensions within the vitiligo community. Nevertheless, the initiative succeeded in spotlighting critical issues, including bullying prevention and the need for insurance coverage for vitiligo treatments—challenges that continue to shape advocacy efforts today.  

Massachusetts Bill H976: A Modern Echo

Massachusetts Bill H976 became a modern echo of earlier legislative efforts when it was introduced on February 16, 2023 by State Representative Rob Consalvo, co-sponsored by Rep. John Lawn Jr.  It aimed to secure full insurance coverage for vitiligo treatments—including phototherapy and mental health services—challenging its classification as merely “cosmetic.” Although bill stalled in May 2024 after being accompanied by study order H4691—a procedural step often used for further analysis—it succeeded in raising public awareness about vitiligo’s economic burden.

Valarie Molyneaux and VITFriends championed H976, organizing rallies at the Massachusetts State House, delivering testimonies from patients denied coverage, and lobbying lawmakers directly. Although the bill stalled due to resistance from insurance companies and died in the chamber in May 2024, H976 raised public awareness about vitiligo’s economic burden and inspired similar initiatives in New York and California.

Legacy: Unity Amidst Division

Over the years, advocacy efforts by organizations like VITFriends and Vitiligo Bond, alongside grassroots campaigns, have led to proclamations from multiple U.S. state governors officially recognizing June as Vitiligo Awareness Month. These proclamations aim to increase public awareness, promote education, and highlight the psychological and social challenges faced by individuals with vitiligo. Vitiligo Bond shares a list of states where governors have issued such proclamations, starting with Delaware Governor Jack Markell, then in alphabetical order: Alabama, Colorado, Connecticut, Florida, Georgia, Indiana, Louisiana, Maryland, Massachusetts, Michigan, Minnesota, Mississippi, Ohio, New Jersey, North Carolina, South Carolina, West Virginia.

Looking back from 2025—ten years after Valle unearthed the National Vitiligo Act and 50 years after it was first introduced—it’s clear his discovery sparked a renewed wave of activism. While National Vitiligo Awareness Day has yet to gain official recognition in the U.S., World Vitiligo Day continues to thrive globally as a unifying force.

The ill-fated attempt to shift from June 25th to October 17th remains a stark reminder that fragmented efforts can dilute progress. Yet, what began as an obscure piece of legislation has transformed into a symbol of resilience and hope for millions affected by vitiligo.

As Valle reflects: “We didn’t just find a bill; we found our history—and our future.” This story shows how even forgotten history can inspire meaningful change when placed in capable hands.

Suggested reading: 

• History Of The World Vitiligo Day