1. Why this follow-up exists

This piece continues the conversation started in “The Vitiligo Paradox – Common Disease, Rare Funding,” where we showed that vitiligo received just 22.3 million USD across 166 NIH awards from 1985–2024 – less than 0.25 USD per patient per year in the United States.

Now that we know roughly how much money there is, the next question is: Not just how much funding exists, but who is trusted to use it, what they work on, and what that means for people living with vitiligo?

The goal here is not to point at any single agency or institution, but to describe the landscape honestly and highlight where it could work better for patients. That matters, because vitiligo is not just about “spots on the skin”: studies in recent reviews report that around 6–25% of people with vitiligo experience suicidal thoughts, and quality-of-life scores (DLQI) are a growing focus of research.

In other words, this is not an abstract discussion about budgets. It is about who gets to shape the science behind a disease that can quietly rearrange someone’s entire life.

2. The “medical school lock-in”: Where NIH vitiligo dollars go

A recent analysis mapped every NIH award for vitiligo research with cost data between 1985 and 2024 – 144 awards totaling 22.3 million USD in 2024-adjusted dollars.

One pattern stands out:

• US medical schools received 18.36 million USD across 106 awards – about 82% of all identified funding.
• Other domestic higher-education institutions, research institutes, and non-profits each received well under 10%.
• Domestic for-profit companies together received 856,384 USD across 4 awards – around 3.8% of total funding.

At the institutional level, the top recipients are almost entirely academic centers:

• University of Colorado Denver – 6.93M USD (37 awards)
• Yale University – 3.40M USD (11 awards)
• University of Massachusetts Medical School – 2.81M USD (15 awards)
• Loyola University Chicago, NYU, University of Virginia, University of Cincinnati, UT Southwestern, Howard University, and one small biotech follow behind in the mid-six to low-seven-figure range.

Call it a “medical school lock-in”: when NIH does invest in vitiligo, the money flows mainly through a familiar cluster of academic dermatology hubs.

There are good reasons for this. Academic centers have:

• Grant-writing infrastructure
• Track records in autoimmunity and pigmentary disorders
• Access to biobanks, imaging and core facilities
• Trainees who fuel publication output

But that concentration also shapes what kind of science gets done – and what struggles to get started.

3. What the bibliometrics add: Busy literature, narrow gate

If the NIH data show where the money lives, the bibliometric analysis shows what that money produces – and where it doesn’t.

A recent global bibliometric analysis of vitiligo research from 1963–2023 reviewed 1,374 articles indexed in Scopus. It showed that:

• Publication volume has risen steadily, with a clear surge around 2020–2021.
• The United States, India and the United Kingdom are the three most productive countries, followed by Italy, China, France, Germany, Turkey, Iran and the UAE.
• Four main thematic clusters dominate:
  • Epidemiology (prevalence, demographics, risk factors)
  • Psychological aspects (quality of life, DLQI, stigma, suicidality)
  • Conventional treatment (topicals, phototherapy, excimer, steroids, vitamin D)
  • Advanced treatment (JAK inhibitors, biologics, targeted pathways)

4. Where companies fit in: The small-biotech problem

Inside this academic-dominated system, one small US biotech appears in the top-10 NIH recipients – the only commercial entity on that list.

Across three SBIR/STTR awards (totaling about 750,000 USD), this company proposed a “novel immunotolerizing therapy for autoimmune vitiligo,” explicitly aiming to restore immune tolerance and arrest progressive depigmentation. It is exactly the kind of bold, disease-modifying concept many patients hope to see tested.

From the outside, however, what we can see is limited:

• No obvious registered clinical trial of a vitiligo drug from this program
• No clearly identifiable therapeutic candidate in the current vitiligo pipeline

That does not mean the project “failed.” It could have:

• Pivoted to another autoimmune indication
• Stalled due to capital constraints
• Produced mechanistic insights that remain proprietary or unpublished

The point is less about this one company, and more about the pattern:

When only a tiny fraction of vitiligo funding reaches small, translational companies, the community has very little visibility into whether those experimental approaches succeed, stall, or quietly disappear.

By contrast, academic centers – even when they move more slowly toward products – reliably generate papers, reviews, and conference abstracts that become part of the shared knowledge base.

5. What the “lock-in” means for patients

Taken together, the NIH analysis and the bibliometric study suggest a funding-and-publication ecosystem with three main characteristics:

1. Concentration of trust
   A small group of US and European medical schools and dermatology units are repeatedly funded, repeatedly published, and treated as the default homes for vitiligo science.
2. Geographic and institutional blind spots
   High-prevalence regions like parts of Africa and South Asia remain under-represented in funded projects and publications relative to disease burden, even as activity from countries such as India, Turkey and Iran grows.
3. Limited diversity of research actors
   With only four for-profit recipients of NIH vitiligo funding across nearly 40 years – and just one small company in the top-10 – there is relatively little room for alternative development models, community-based research or patient-driven innovation.

This is not a story of villains. It is a story of a path-dependent system: once a set of institutions is established as capable and reliable, they continue to receive the bulk of opportunities.

For vitiligo patients, the question is simple:

How can this existing infrastructure be complemented – not replaced – so that more diverse ideas, geographies and organizations can participate in solving the disease?

6. From description to direction: Constructive ways forward

Building on The Vitiligo Paradox and these new data, a few constructive directions emerge.

7. Closing the loop – and a preview of Part 3

Four decades of NIH funding and six decades of published literature paint a consistent picture:

• Vitiligo research has delivered far more science than its small funding base would predict.
• Academic medical centers have carried most of that load, for understandable structural reasons.
• Small companies occasionally appear as ambitious outliers, but the system offers them limited runway and little obligation – or incentive – to report back when projects pivot.

The next phase does not require tearing this ecosystem down. It requires widening it:

• More diversity in who gets funded
• More transparency in what happens to publicly supported ideas
• More alignment between research themes (advanced treatments, psychology, epidemiology) and the lived priorities of people with vitiligo

For my part, I’ve been tracing the vitiligo R&D landscape for the past seven years and continuously updating our Vitiligo Drug Pipeline and Market Insights report. Like everything else we publish, it is a totally free publication meaning no "sponsor" would quietly nudge what's inside. Actually, nobody is paying me to do this – if anything, it costs time, sleep, and a few grey hairs – but it feels like a modest way to contribute to the collective effort to develop effective, accessible vitiligo treatments.

Vitiligo has already shown, repeatedly, that targeted investment can produce outsized scientific returns. The challenge now is to ensure those returns are distributed more broadly – across institutions, countries and, ultimately, into the lives of patients.

If you’re curious about “Part 3” of this story – not just who gets the money, but who is actually developing which drugs and technologies – see the Vitiligo Drug Pipeline and Market Insights report, where I map the current global pipeline and the companies behind it for you.

Yan Valle

– Prof. h.c., CEO VR Foundation | Author "A No-Nonsense Guoide To Vitiligo"

Further Reading

• 📌 Vitiligo Drug Pipeline Analysis and Market Insights
• The Vitiligo Paradox – Common Disease, Rare Funding
• Sixty Years of Vitiligo Research: Where We’ve Been and Where We’re Going
• The Real Price Tag of Treating Vitiligo: What You Need to Know

Listen to podcast Deep Dive in Vitiligo

• WHO Finally Notices the Skin — What It Means (and Doesn’t) for Vitiligo (Ep. 50)
• Pharma, Startups, and AI: From 2024 to 2025. (Ep. 17)

Sources

1. Elbuluk N, Hamid A, Turner K. National Institutes of Health Funding for Vitiligo Research from 1985 to 2024. J Drugs Dermatol. 2025;24(12):1260–1263.
2. Hapsari K. Bibliometric Analysis of Research Trends in Vitiligo From 1963 until 2023.
3. A novel immunotolerizing therapy for autoimmune vitiligo – NIH SBIR/STTR abstract (R44AR065886).