2018 JDRF Revenue and Expenses Overview

This is a repost of a report by JDCA, Juvenile Diabetes Care Alliance. JDRF released their 2018 audited financial statements last week. Key takeaways are detailed in the bullets below.

  • JDRF is an extremely effective fundraising organization. It raised $227 million in 2018. See Appendix A.

  • Nearly all of JDRF’s money comes from fundraising.

  • JDRF spent (expenses) $208 million in 2018, up from $193 million in 2017. See Appendix B.

  • 37% of JDRF money spent in 2018 was used to fund research grants. The other 63% was used for non-grant expenses such as public education, lobbying, meetings, and salaries.

  • 67% of money spent in 2008 was used to fund research grants, while only 33% was used for non-grant expenses.

  • $156 million was spent on research grants in 2008, compared to only $84 million in 2018— a remarkable decline of nearly 50%.

  • All non-research costs have increased (with the exception of office rent) in recent years. See Appendix C.

    • Payroll and Related expenses have increased by $31.2 million since 2008, up 62%.
    • Public Education expenses have increased by $20 million since 2008, up 55%.
  • JDRF has never explained nor justified the rationale behind the strategic shift that resulted in a 50% reduction in research spending levels over the past decade.

Appendix A: Sources of Income

Appendix B: JDRF Uses of Income (Expenses)
app%20B

Appendix C: 2008 vs. 2018 Annual Spending Change (In Millions)
app%20C

@jacquiecdv

You posted a similar thread just a few weeks ago: Another disappointing report regarding donations to JDRF

It seems to me that you are trying to make JDRF look bad. Either that, or you simply have no understanding of what it takes to find a way to effect the end of a disorder that affects a small number of the people who live on Earth.

Go back and re-read the responses to your earlier thread. Try to learn something from those posts.

Or, if you would prefer, start your own non-profit and see if you can effect a “cure” for Type 1 Diabetes yourself.

It is so very easy to be critical of people and organizations that attempt to help people. It is much, much harder to roll up your sleeves and “get in the trenches” and do the hard work, day-after-day, week-after-week, year-after-year.

I have no more patience with your complaints about JDRF. If you think you can do better than they do, go do it.

Bill

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I didn’t write the post. Like the last time, I forwarded this publication from a JDRF watchdog group called JDCA, Juvenile Diabetes Cure Alliance. I feel like it’s important for their findings and analysis to be disseminated to people who actively participate in fundraisers for JDRF. I’m not suggesting anyone turn against JDRF, nor am I criticizing. Every non-profit should be subject to oversight. You yourself made that point the last time I posted such a report. I’m not demanding that you like the info or even that you read it.

It’s noteworthy, isn’t it, that JDRF spent $71.7 million LESS on research in 2018 than in 2008, but $31.3 million MORE on payroll and related expenses in 2018 than in 2008? Considering the only revenue is from donations? I feel like maybe the numbers merit a couple of questions.

If you’re suggesting I shouldn’t be allowed to share information or concerns like this, that’s a wholly different matter I’ll be happy to discuss with you offline.

So, what you have done is “Re-post” information from another site without providing a reference to the original source. Hmmmm… And it would appear that the “source” is an organization that is competing with JDRF for contributions; they have chosen to “compete” by being openly critical of JDRF. So, with your post, you are essentially trying to make this forum a “satellite” of their efforts. Sorry, I don’t care for that.

As I said above, I have no patience with your complaints. Over my many years of practice, and in my 60+ years of living with diabetes, I have seen the horrible toll that this disorder has on lives. I have seen the looks of fear in parents’ eyes when they are told their children have diabetes, I have seen the grief of parents after their children have died from diabetes, I have seen the despair of patients when they face diagnoses of retinopathy, nephropathy, and neuropathy, and I have counseled patients on their death beds as their lives end because of ischemic guts. Any way you slice it, Type 1 Diabetes ain’t pretty. But we can make lives, and good ones, in spite of it. To do that patients with the disorder require education, they require and benefit from networks, and, in the long run, success of “curing” this disorder takes advocacy - keeping awareness of the disorder “front and center” in the public’s mind. JDRF attempts to do that, and more. Yes, people get paid for the jobs they do, but according to the “real” charity watch dogs, JDRF does a pretty good job in their use of their contributions. When the “real” watchdogs become critical of JDRF I’ll get concerned.

If you really want to do something for people who have Type 1, volunteer your time at a summer camp for kids/adults who have T1D. Or pedal in a bicycle fundraiser. Or volunteer your time to work in a PT Gym where T1D amputees are learning to walk on new orthotics. Or volunteer your time to fetch and carry for T1D patients being treated at a dialysis center. Or go and read to T1D hospice patients as they wait to take their last breaths. Do something constructive. Offer people help, and hope that they can have a life while they wait for a “cure.”

I have no patience for the stunt you are trying to pull. Yes, you are entitled to your opinion. But the way you are trying to spread JDCA’s propaganda (as if it is your “own work”) is questionable. This “cure” thing is still just a mirage. When people fix their focus on “a cure,” they often fail to do the hard work that needs to be done to live well with diabetes.

Go pursue your mirage if you want to. I’ll have no part in it.

Bill

You got me. I didn’t make it clear I was reposting the findings of the JDCA. I did in Another disappointing report regarding donations to JDRF, the one you mentioned in your initial response. I sourced the report in my first sentence, and I will make that change to this post right now.

You have, however, incorrectly characterized the organization as competing for JDRF’s business. I think you’ve missed the point. I wrote JDCA’s Executive Director Phil Shaw, and here’s what he had to say about the organization.

…the JDCA charter is more analyst than community organizer. On occasion we lead awareness and advocacy campaigns but usually only once or twice a year.

That said, we do not think donors should leave the JDRF but, rather, should loudly communicate that the drift away from research is not desired. We will launch a petition to this effect later in the summer but, in the meantime, you can write a letter, ask your friends and family to write, arrange a meeting, contact your regional JDRF executive, etc. Let them know that 37% is not a thing to feel good about (and let them know that further continued decline in research funding is not what you want).

We do the work we do to help us all make more informed and clear giving decisions.

In other words, these reports are not fighting words. I’m presenting them to extend the reach of an analysis that seems worth a look. I’m not asking for your patience, nor do I believe I’m instigating a fight. I’ve had the disease for 36 years, but I’m only one person. I doubt anything I say will make a significant difference in terms of the allocation of JDRF donations to research. But boy, I wish it could.

And not for nothing, Bill. “The mirage of a cure?” I imagine the Canadian scientists who developed insulin into a consumer treatment were driven by hope for a cure.

I’ve done a lot for my fellow type 1 diabetics and for veterans with type 1, though your response indicates that somehow you know better.

Of course I have hope for a cure. Denise Faustman and her team are in Phase 2 clinical trials with BCG which has shown promise for long-term type 1s. JDRF used to fund her research. I haven’t been able to get a satisfactory answer as to why they are no longer doing so, but if it came down to it, I’d rather JDRF throw a couple of million from the payroll and expense budget into HER hopper. Maybe she’d be able to fund her trials more quickly. I’d feel much better about donation money being used that way than being used to pay an executive board member’s salary and expenses. And I don’t really care how deluded you believe that sounds.

Sounds like there may be some history in this debate and I want to be respectful of everyone. JDRF is a great organization and we are blessed to have them advocating on our behalf. I don’t have Type 1, but lost my father to it and now help my son manage through it. It’s still good to know these numbers (if accurate) and questioning admin vs research spending is appropriate to keep any non-profit accountable. Bill, I agree with your comment on cure vs manage. Cure publicity is more around fund raising than reality in the short-term. Many recent press releases are regurgitations of decade old news that keeps circulating to give hope and encourage donations. In talking to one of the leading Endocrinologists in the world, his opinion is the US medical community is no longer in the cure business. We have a health care system that is driven by extending life expectancy and living with chronic diseases that used to kill us much younger. That’s where all the real funding goes as opposed to actually curing anything. His opinion was that the best opportunity to find a cure is via stem cell research, but the social and political climate is too hot and work in that area will be very limited. Even if a doctor was to pursue individually the entire hospital system they work at could lose all research funding if they crossed any lines no matter how promising the research might be.

Here is Dr. Faustman’s explanation of how BCG produces a reduction of HbA1c over time:

https://eurekalert.org/pub_releases/2018-10/d-pmb100218.php .

If you read closely, Dr. Faustman offers that “the BCG vaccine uses a novel mechanism to change the way the body consumes glucose–from oxidative phosphorylation (the most common pathway by which cells convert glucose to energy) to aerobic glycolysis, a state that speeds up the rate cells turn glucose into energy.” She doesn’t offer a “cure”; instead she opines that BCG introduces a novel method of glucose metabolism. It’s another method to lower blood glucose levels. It may be a “tool,” but it’s no “cure.”

Here’s the real “rub” with Dr. Faustman’s statements (in my opinion). She is quoted as stating that diabetes develops as an effect of “increased hygiene” (i.e., T1D develops because we keep our houses too clean) - read the article and her other explanations of the hypoglycemic effects of the BCG vaccine - that’s how she now explains the effect.

But wait a minute! The term “diabetes mellitus” was coined by Aretaeus in the second century A.D. Antiseptics and antibiotics certainly weren’t around then. Here’s how Aretaeus described diabetes:

A wonderful affection not very frequent among men, being a
melting down of the flesh and limbs into urine…The kidneys and
bladder…do not cease emitting urine, and the outpouring is
profuse and without limit…The development of this disease is
gradual, but short will be the life of the man in whom the
disease is fully developed…Life for the patient is tedious and
full of pain. The desire for drink grows ever stronger…He
cannot be stopped either from drinking or from urinating…They
despair of all and death occurs shortly amid a burning dryness,
thirst as if caused by a burning fire…And when the disease is
at its height they urinate constantly. From this fact, the
disease has derived its name, ‘diabetes,’ meaning ‘siphon,’ for
fluids do not remain in the body, but use the body only as a
channel through which they may flow out. (cited in Reed, 1954,
p. 420).

Sound familiar? And remember, insulin was first described in the 1920’s; certainly not the most hygienic of times - most people still lived in very rural settings. Some of the earliest deaths reported with the use of long-acting insulin (in the 1930’s) were farmers. Farmers? Lack of contact with the soil? Too hygienic? I don’t think so. If hygiene was the issue the incidence of T1D would be much, much higher in the developed world.

I believe very strongly that research toward a cure for diabetes needs to be done. But it is imprudent to grant “cure money” to research that has demonstrated it is a “tool” for, perhaps, helping to manage hyperglycemia.

I have said it before and I’ll offer it as my opinion again, T1D will never be “resolved” until we fully understand the interplay between the human immune system, cell metabolism, and DNA sequences (and “defects”). Do I think JDRF should “spend” their “cure money” for such research? Yes! And their donations might be best spent if they support active research projects that “overlap” questions that seem to underlie basic diabetes “cure” issues. At the same time I believe they should spend money, like they do, to give every person with T1D the best opportunity to make the most of their life given the limited tools we have at our disposal.

Bill

Hey, I like talking about Dr. Faustman as much as anybody.
Here’s an even clearer summary of her work that appeared in Insulin Nation earlier this month. Insulin Nation article

BCG Vaccine Shows Promising Signals of T1D Efficacy

We spoke with Denise Faustman, MD, Ph.D., Director of Immunobiology Massachusetts General Hospital, and Associate Professor of Medicine Harvard Medical School. The following is a summary of the research that she and her team are working on.

Early Islet Trials

I started my career doing islet transplants 25 years ago and was involved in the first islet transplant trials in the US.

Sadly, we learned that when doing islet transplants as part of kidney replacements, the kidney lived while the islets died. The cause was that the underlying bad white blood cells which remained in the body sensed the new islets and reignited their autoimmune response, killing the new islets just as effectively as they had initially killed the beta cells in the pancreas.

This discovery drove us to try to understand bad white blood cells so we could get rid of the underlying disease. Other transplant efforts discovered the same thing. For example, liver transplants to people with autoimmune hepatitis result in the new liver becoming diseased.

Basic Autoimmune Research

We found in human and mouse research that defects in white blood cells causing disease had a signaling pathway that we could drug. Autoimmune treatment strategies often aim to target all white blood cells but this pathway suggested we could perhaps kill only the bad white blood cells and also, perhaps in mice & humans, induce the good white blood cells that quiet the immune system, i.e. regulatory T cells (T regs). This defective signaling pathway could be changed from the cell surface by exposing white blood cells to Tumor Necrosis Factor (TNF), a protein that had the double attribute of killing the bad white blood cells while proliferating the good cells.

TNF, however, was too expensive to use as a therapy for diabetes.

We looked for generic drugs that stimulate TNF. That is how we found BCG.

BCG Vaccine

The Bacillus Calmette–Guerin (BCG) vaccine is a microorganism developed as a vaccine for tuberculosis (TB) more than 100 years ago and has also been used as therapy for bladder cancer for the last 40 years. BCG is still the most commonly used vaccine in the world with 90 million newborn infants vaccinated annually. Interestingly, the only places in the world that don’t routinely use BCG vaccine are the US, Europe, and Australia.

BCG vaccine is a live, attenuated, microorganism derived from cows that have TB and then cultured in lab settings.

This animal-derived culture approach is old-school medicine.

And it is cheap. For example, the complete BCG dosing plan for bladder cancer costs $156 per dose.

Hygiene Hypothesis

The Hygiene Hypothesis was developed in the UK in the 1960s. It found that autoimmunity was disproportionately on the rise in wealthier families, living in clean houses, with fewer children and good access to medical care.

According to the Hygiene Hypothesis, limited early childhood exposure to infectious agents, symbiotic microorganisms, and parasites increase susceptibility to allergic diseases by suppressing the natural development of the immune system.

Everything and everywhere in modern America and Europe is clean and controlled. We have become a Purell Culture.

A super-clean environment is a better explanation of the growth in autoimmune diseases than saying human genetics have drifted. It is the environment that has changed.

Why Isn’t BCG Vaccine Standard in the US and Europe?

The incidence of tuberculosis (TB) is low in North America and Europe. A purified protein derivative (PPD) skin test is a test that determines if you have TB. If however, you had the BCG vaccine, you would get a false positive from the PPD skin test.

False positives are inconvenient, and public health policy changed overtime to stop recommending BCG vaccine in Europe. This vaccine has never been a recommended vaccine in the US. As a result, demand dropped, and FDA/EMA regulated sources stopped producing the vaccine. Without FDA/EMA regulatory control, different strains of BCG proliferated around the world. Not all strains, however, are therapeutically equivalent and the reliability of the BCG vaccine diminished.

New BCG Vaccine Source

It took five years for us to locate a new BCG vaccine source that followed FDA Good Manufacturing Practices and used the best testing. This source produces the Tokyo strain which shows a good effect in stimulating TNF. Trials are underway to see if this strain also has efficacy in suppressing autoimmunity.

Status of T1D Trials

Generic drugs with good records of safety can, in general, move through clinical trials at a faster pace since safety is always a major concern for any “new” drug. All trials, even generic trials have to, of course, prove efficacy.

Phase I Trial

Our Phase I T1D trial began over ten years ago, and we still follow each participant. The BCG treated participants all had T1D for at least 20 years, and their C-peptides were undetectable with no residual pancreas insulin production function. We wanted the people who had established type 1 diabetes.

Initially, this trial was limited to 22 weeks, and the results were modest, clinically-detectable but small changes in C-peptide and the dramatic death of autoreactive T cells. Induction of good T cells occurred but there was no change in insulin usage nor HbA1c levels. This was a success as we showed the mechanisms we were looking for and then we were able to move to Phase II.

Two things happened next. First, we had a disruption in our supply of BCG and spent nearly five years getting a reliable source of BCG back online. Second, a study in Italy using BCG therapy for multiple sclerosis showed that it took two to three years for BCG to have its full and important clinical impact. We reopened our Phase I study and started following the Phase I patients to see if there was a similar delayed clinical effect. To our pleasant surprise, we found that after three years the HbA1C’s of our participants returned to near normal.

In this first study, long-term diabetic subjects received at least two BCG vaccinations, but they do not experience the restoration of normal blood sugars until about three years later. Once the blood sugars return to normal, however, the therapeutic effect endures beyond five years.

The interesting outcome is that BCG restored patient blood sugars to near normal without increasing their ability to produce insulin naturally in these very long-term subjects. We think this is due to resetting their glucose metabolism to a high glucose utilization mechanism in their lymphoid system. These findings support the Hygiene Hypothesis and indicate that mycobacterial reintroduction in modern humans will improve their immune and metabolic functions.

Phase II Trials

Our Phase II T1D trial is now fully enrolled with 150 adults. It is a five-year study that is double-blind and placebo-controlled. We have about three years to go.

We are simultaneously working toward starting two other Phase II Trials.

  • Phase II Pediatric Trial so we can provide parents with diabetic children a path forward
  • Phase II Expanded Access Trial

The Expanded Access Investigational New Drug (IND) process originated in the 1990s by AIDS activists who wanted access to potentially life-saving generic drugs while they were still being tested in clinical trials. It allows many more people to participate in the Phase II Trial. These patients will be “open label” and 100% of participants would get the BCG vaccine. We are working hard to set up the trial and define the costs for patients to participate.

We are considering 500 to 1,000 participants in the first stage of the Expanded Access trial, but as we begin to explore options there may be opportunities for more. Again, money always drives these generic drug development steps. We may be able to get support from forward-thinking health plans to help pay for patients to enroll.

Next Steps

Once all these Phase II trials are complete we should have enough data to make a convincing case to the FDA that BCG vaccine can be used to restore near-normal blood glucose in people with T1D. The Phase II trial is much bigger and includes a greater range of type 1 diabetics including patients that are younger than the Phase I patients. It will be interesting to see if these patients can regenerate some of their endogenous insulin production, which is why we are carefully tracking C-peptide as well as HbA1c. We are also very excited to start a pediatric trial for the same reason.

Additional Phase II trials will be required to determine when to revaccinate people.

There is now global data suggesting that prophylactic use of BCG vaccine among high-risk T1D children cold become an accepted practice especially because of the low risk associated with BCG’s solid safety profile.

Animal work has also shown that Type 2 Diabetes is also amenable to this therapy. Clinical trials in humans will have to be done to move this work forward.

You seem to agree with some of the fundamentals of Dr. Faustman’s research. While I believe she may very well be moving in the direction of a cure, at the very least you’d have to concede she’s doing some worthwhile work.

To reiterate my original point, I believe it is incumbent upon us to press for accountability regarding the direction of fundraising dollars, especially regarding research vs. payroll. Money should go to research first. Payroll should not be increasing when money for research has been steeply declining.