The Cut

Trump’s proposed budget is out. Among all the cuts – because you have to cut in order to increase defense spending while simultaneously giving the rich a tax cut – among all these cuts is one that people with ME should take very personally. NIH’s budget will be cut by 18% or $6 billion in fiscal year 2018, if Trump’s budgets passes as is. The proposed budget also calls for a reorganization of NIH’s Institutes, but offers little detail. Here’s how I feel about that:

Hang on. That wasn’t enough.


Yeah, that’s how I feel.

This is nothing short of disastrous. NIH is the largest source of biomedical research in the world. NIH scientists discovered the bacteria that causes Lyme disease. They demonstrated the effectiveness of the first drugs used to treat AIDS. The biomedical research enterprise in the United States is built on NIH as its foundation. Cutting that foundation by 18% will be catastrophic for human health.

In addition, more than 80% of NIH’s budget goes out the door to fund academic biomedical research, largely in the United States. How will researchers do their research? I guess they’ll have to do 18% less of it. But it won’t just affect those researchers’ salaries paid by their grants, or the purchase of equipment (I wonder what will happen to the businesses that supply that equipment?), or the training of doctoral and post doctoral students. It will affect American universities, research hospitals, and other research institutions.

The university system is dependent on indirect costs tacked on to grants. Indirect costs are a percentage added to a grant by the university. It covers the costs associated with university infrastructure, like buildings and administration and libraries. If NIH’s budget is cut by 18%, then NIH will fund substantially less academic research. And if substantially less academic research is being funded, then American universities are stuck holding the bag. Because universities will still have buildings and staff and libraries, but a big chunk of that cost will not be covered by the indirect costs normally charged to grants. Trump’s budget may cut taxes for the rich, but it’s one hell of a tax on our universities.

This girl captures my response to this foolishness.

If the negative impacts of such a dramatic cut to NIH are that easy to identify, why is Trump proposing to do it? Apart from Trump’s desire to increase defense spending while cutting taxes, the Administration’s director of the White House Office of Management and Budget offered this explanation: “We think  there’s been mission creep” at the NIH, he said. “We think they do things that are outside their core functions.”


Ok, but so what, right? After all, it’s not like NIH spends a whole lot on ME. Just $7.6 million in 2016. So who cares if NIH has a funding cut, right?

Are you prepared for an 18% reduction in ME spending?

I’m not. For one thing, the first year of funding for the new Collaborative Research Centers is set aside in this year’s budget. But all bets are off going forward. Like many other RFAs, the one for ME Centers explicitly states, “Future year amounts will depend on annual appropriations.” So it is possible that future years of funding could be cut or eliminated.

It’s common sense to conclude that if NIH’s budget is cut by 18% next year, every program and RFA and grant pool will be severely cut. NIH will make far fewer grants, and that will hit everybody hard.

But that could even be a best case scenario. After all, if I’m NIH and my choice is between an HIV/AIDS study and an ME study, there are a lot of reasons why I’m going pick HIV. Biodefense? Flu? Alzheimer’s Disease? Epilepsy? Spinal cord injury? Osteoporosis?

We’re not winning out against those diseases now. Do you really think that NIH will say, well, we should spread that 18% cut around evenly across the board. Do you expect that this cut will be applied fairly? Is any university going to support a faculty member who wants to apply for an ME grant instead of  . . . basically any other disease?

ME research is stigmatized now. ME research is on a starvation diet now. What happens in any system when resources become more scarce? The weakest members of the system lose. And they lose hard.

Whatever your political views or affiliations, whatever you think of the current Administration, if you want to protect research funding then you have to make your voice heard. Call your Representative today. Make sure he/she knows that you support NIH funding and ask him/her to do the same.

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13 Responses to The Cut

  1. Cort Johnson says:

    Great blog! Thanks for laying that out so well. Time to get to work.

  2. Tara says:

    Completely agree that this is devastating to ME and similar diseases. The well-known, already well-funded diseases like cancer and heart disease will still get funded because they have a big reputation and lots of powerful backers, so it’s the “smaller” and the more experimental projects that will fall first. I’m in the Undiagnosed Diseases Program at NIH, where they take “medical mysteries” and run their genome in the hope of discovering new diseases or new understandings of current disease. That type of program can greatly advance knowledge of how bodies work and why disease happens, but it may be hard to justify these “shot in the dark” endeavors under big budget cuts. (Selfishly, they’ve already got my family’s blood and I’m praying it gets run before the belt-tightening begins! Less selfishly, I think of all the really wonderful nurses, technicians, administrators, doctors, and researchers that I’ve met at NIH and worry about the effects on all their jobs as well as the work itself.)

  3. Sharon R says:

    That is horrible news. Just this past week I I said I feel like screaming at the top of my lungs “why won’t the government help us” (Canada). I realize as well how NIH has kept research afloat in other countries, we appreciate that. Quite ashamed of our government. As long as our top doctor – Federal Minister of Health and Canadian Institute of Health and Research choose psychiatric bias, it permits doctors to continue taumatizing their patients. It is all so disgusting.

  4. Linda Sleffel says:

    I will be protesting this as loudly and repeatedly as possible to my senators and House member–not just the NIH cuts and the other cuts, but the whole idea that we need more military spending and tax cuts for the wealthy.

    This budget is a sick joke, and I will be screaming as loudly as a sick person who can’t leave home can scream.

    And the budget will be protested and rejected by every sane American–I wonder how many that will be. Because everything about it is wrong and dangerous and destructive.

  5. kathy d. says:

    I warned about this during Trump’s candidacy, that he’d cut NIH and a lot of other funding. But NIH is not alone. He’s proposing billions cut to the EPA and 3200 staff cuts, in addition to gutting environmental protections. He appointed a guy to lead the agency who has sued it 14 times.
    This is also true about the labor department and many other agencies. He’s proposing no funds to the National Endowment for the Arts (or Humanities) and cuts to Legal Services. He’s also proposed cutting Meals on Wheels for older people and those with disabilities. And the list goes on and on.
    He has always wanted to cut taxes for the rich, not a secret. As NY Times writer and economist, Paul Krugman, has said, Trump seeks to cut taxes for the rich and benefits for the poor.
    And then he plans to attack Medicaid which 70 million people use. This is cruel.
    And the rollback on the Affordable Care Act is cruel, too; 20 million people have gotten health coverage through it, and Trump and his gang want to stop the subsidies and cut the Medicaid rolls. So millions won’t have coverage and will suffer without health care. But the wealthy 1% will get great tax cuts if the ACA is repealed, and they’re loving this. Paul Ryan even bragged about this (see video); he’s ecstatic.
    So, yes, I concur: Call representatives, get others to do it, too. People should go to congressional offices and town hall meetings (I know most of us can’t do that, but our friends, neighbors and families might be able to do it.) This requires more than business as usual.

  6. Pat Radcliff says:

    It’s far beyond being sad–it’s immoral. Today I am too tired to be angry–too tired to cry, but I am not too tired to contact my representatives in Congress!! We can shout via our computers and telephones!!! Our country, more than ever, needs the people’s voices to be heard.

  7. Maria says:

    I’m still shocked that so many ME patients voted for Trump.

    What do the Trump supporters have to say now in his defense?

    I certainly hope they will join with us in opposing this cruel and draconian cut to NIH’s budget.

    Or, perhaps they will find some way to justify the cut, just as they have justified Trump’s other attacks on the sick and the vulnerable.

  8. Marc Simon says:

    While recent news is disappointing to say the least, it reminds us that we might not want to put all our eggs of hope in the basket of the federal government. Many PWC’s spend a fair amount of money trying to find something that will make them better. If we could just devote 5% of this money to scientific research it would make a difference. There are also private sources of funding for medical research – it would make sense for us to devote some energies to finding these sources and lobbying them for help. Finally we might also want to lobby people who control the curricula at major medical schools around the country. If we can get more doctors to properly diagnose CFS/ME sufferers, there will be that many more people who can contribute to research and engage in advocacy. If 80% of CFS/ME sufferers are still diagnosed, changing that equation will make a big difference.

    • Marc Simon says:

      make that “If 80% of CFS/ME sufferers are still UNdiagnosed, changing that equation will make a big difference.”

  9. kathy d. says:

    Have folks seen Julie Rehmeyer and David Tuller’s op-ed in Sunday’s NY Times denouncing the PACE trials and kind of challenging the Lancet which didn’t criticize the study. It’s a good article.

    On the Trump voters, many of those who would lose health care under the Ryan/Trump/Price bill are going to feel a lot of pain if that bill passes. A lot of middle-aged and older people who voted for him and get subsidies under the exchanges or got Medicaid through its expansion, etc., will lose coverage. It hits their demographic.

    It’s beyond me to understand how anyone believed him about anything.

  10. Kathy D. says:

    Article in Nature journal on the studies on physical underpinnings of ME/CFS. And a post at Francis Collins’ blog about the need to research this disease.

    The tide seems to be turning — a bit.

  11. Jan says:

    I wrote them all. What I don’t get is how this makes it through the Senate.

  12. Cindy says:

    Great blog, as always. Thanks, Jennie. Love the pic, too.

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