February 2, 2025 • 31 mins
Kevin uses AI to analyze all information to get a picture of what may happen in regards to HD research in light of possible policy changes due to a new U.S. administration. This is not a political post.
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Episode Transcript
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Speaker 1 (00:16):
It's time to speak up, It's time to speak out.
Welcome to We Have a Voice Community discussions about Huntington's
Disease and juvenile Huntington's Disease. Show host James Valvano, you
are loved. Hello, and welcome to We Have a Voice Radio.
(00:42):
My name is Kevin Jess and I'll be your host today.
I wanted to come on. I haven't come on in
a long while, and so I just wanted to come
on and touch on some you know, the things that
are going on right now. And it is, you know,
the beginning of of still you know, at the beginning
(01:02):
of twenty twenty five. We're now February first, and and
but you know, I wanted to wait until the new
government forms in the United States before I said anything
at all. And I want to remind that this is
not in any way a political show. I am neutral,
(01:28):
so I do not engage in political stunts or what
have you. What I wanted to talk about is what
are what could we? What could we? Because you know
you can't you can't predict the future, but what you
(01:50):
the best predictor of future events are past events or
the same as you do with behavior, the best predictor
of future behavior is past behavior. So I wanted to
talk about the state of of what could happen, uh
(02:12):
now with funding for Huntington's disease research now that there's
a new government in the United States. And I say,
and I say that because it's important, because I mean,
the United States is is of prime Uh. You know,
they've got the money, they're gonna you know, they can
they can do things that other governments around the world
(02:34):
cannot simply just because they have they have the bus,
you know. But nevertheless, so let's look at the past
and and then we'll jump to to now. So what
I wanted to know is how Trump era policy, so
(02:58):
the the four years that he was president before could
have impacted medical research, in particular with Huntington's disease. So
from twenty seventeen to twenty twenty one, that's really what
I'm looking at here is there were Trump administration's budget
(03:19):
proposals between twenty seventeen and twenty twenty one repeatedly targeted
the National Institutes of Health of the NIH for cuts.
For instance, in twenty twenty one, it was a seven
percent reduction three billion cut, including illuminating one point four
billion from NIH's core program grants in twenty twenty. Just
(03:41):
before that, they sought a four point five billion dollar
cut from the National Institute of Neurological Disorders and Stroke,
a key funder of Huntington's disease research. Now what the
impact would that have? Well, reduced grants or NIH funds
(04:01):
are fifty percent of US biomedical research, including HD projects.
Cuts would have reduced the number of grants awarded, stalled
clinical trials for example, gene silencing therapies like tminousent treminison,
and delayed biomarker discovery critical for tracking HD progression. And
(04:22):
then there's the nin DS role. NNDS allocated eighty one
million to HD research in twenty twenty. Proposed cuts threatened
the initiatives like the HD Human Biomarkers Project, which identifies
tools to measure drug efficacy. Also, it affected young researchers.
(04:42):
Early career scientists often rely on NIH grants. Example, RO
one grants reduced funding risk, driving talent away from HD research. However,
what really happened with that, Well, Congress largely reject did
the NIH cuts, but the political uncertainty had indirect effects.
(05:05):
The twenty eighteen omnibus bill Congress increased ONIH funding by
three billion, including four hundred million for Alzheimer's and related dementias.
HD shares some research pathways in that so continuing resolutions.
Frequent government shut down threats and stop gap funding bills
(05:27):
disrupted grant cycles. Researchers faced delays in starting projects or
hiring staff. For instance, the Huntington's Disease Collaborative Research Group,
which relies on multi year NIH grants, warned that funding
instability could fracture international consortia pooling HD patient data. So
(05:48):
the specific risks to Huntington's disease research. It's in a
critical phase with therapies like gene silencing and crisper approach
based approaches nearing clinical application. So we know we've seen
and we see it. If you're on Facebook at all,
you see all the stuff like I've never seen the
(06:09):
amount of stuff that's been happening, and it's wonderful. But
for instance, federal cuts would have delayed clinical clinical trials.
Trials like precision HD testing to Minerson depend depend on
NIIH supported infrastructure, including HDSA Centers of Excellence. It would
(06:30):
have halted basic science NIH funds foundational studies such as
the Huntington's Disease Youth Organization or HDYO Brain Donation Program,
which advances understanding of early HD mechanisms, and it would
have reduced patient access. The NIH supports the HD Clinical Network,
which provides care and clinical trial recruitment. Cuts could shrink
(06:54):
this network disproportionately affecting rural patients. So it also affected
tax policy and philanthropic funding. The twenty seventeen Tax Cuts
and Jobs Act raised the standard deduction, leading to fewer
taxpayers itemizing deductions. This reportedly reduced charitable charitable giving by
(07:16):
twenty two billion dollars in twenty eighteen, into impacting nonprofits
like the Huntington's Disease Society of America HDSA funding supports
caregiver resources and seed grants for researchers. The HDI Foundation,
a privately funded nonprofit that spends one hundred million dollars
annually on HD research. While HDI fills gaps, it cannot
(07:42):
replace the NIHS scale. It affected immigration, so immigration policies
and a talent drain. Now, I know there's a lot
of anti immigrants, you know, stuff out there, but stricter
visa polses, Finnish's H one B restrictions and rhetoric discouraged
(08:05):
international research from working in the United States. Examples, graduate students.
In twenty twenty, forty percent of US biomedical graduate students
were international. Delays in visas or optional practical training approvals
disrupted labs studying HD genetics, collaboration barriers. The NIH is
(08:27):
Undiagnosed Diseases Network, which includes HD studies, relies on global
data sharing, travel bands and visa denials slowed those partnerships. Also,
advocacy and adaptation qHD Advocacy HDSA organized grassroots campaigns, leading
(08:48):
Congress to designate June as National Huntington's Disease Awareness Month
in twenty twenty. Oh, I'm sorry, that's may so. Also
public private partnerships. The HD Regulatory Science Consortium, funded by
NAH and HDI accelerated trial design frameworks and global collaboration.
(09:11):
The European Huntington's Disease Network expanded data sharing with US
researchers to mitigate funding gaps. So what are the long
term implications? Well, Congress ultimately protected in NIH funding, so
that didn't happen, But the repeated proposals created a chilling effect.
Researchers spent time lobbying instead of focusing on science. So
(09:35):
it was wasting their time by having to go to
the government constantly trying to get money to do these projects,
and so that did have an effect. It slows things down.
Pharmaceutical companies grew wary of investing in rare diseases without
any federal partnership, and patients faced prolonged weights for therapies.
(09:57):
HD has no cure and delays directly impact quality of life.
So the takeaway there is that HD research depends on stable,
predictable funding. Even temporary uncertainty can derailed decades of progress.
So that was that was then. So has the new
(10:27):
presidency in the United States. Has it directly said anything
that said like we're gonna halt you know, Huntington's disease research. No, No,
that's not what has happened. He did not always explicitly
single out medical research either in speeches. His budget proposals
(10:50):
and public remarks on spending. Federal spending made his administration's
priorities clear, so the proposals were like in twenty eighteen,
he proposed a seven point two billion dollar dollar cut
to the national instead of health, including eliminating the Fogerty
(11:11):
International Center, which funds global health research. Twenty twenty budget
saw a four point five billion dollar cut. In twenty
twenty one a three billion dollar cut. Again, it didn't
happen because they didn't have control of the entire control
of everything in the government. But that has changed, of course,
(11:35):
now they do. They have control of all the forms
of branches of government. I should say, so, what has
he said personally his public remarks on research funding. He's
rarely done it. He's rarely discussed medical research and detail.
(11:56):
But he did make several remarks criticizing the federal spending
and specific projects. In a twenty seventeen speech, Trump mocked
ANIH funded studies on how mice react to cocaine and
the monitoring of male prostitutes in Vietnam as examples of
wasteful spending. One of these comments were criticized by scientists,
(12:16):
who note that such studies often addressed addiction and public
health crises. Also in twenty twenty COVID nineteen press briefings,
Trump praised nih scientists, for example doctor Anthony Fauci, but
also suggested pharmaceutical companies should go it alone without federal partnerships,
(12:39):
reflecting skepticism about government funded research. So we see here,
I'm having to, you know, to read this, and I'm
just wanting to make sure that I'm following this along correctly.
(13:01):
But Congress, so including many Republicans, rejected most of these
proposed cuts, and the NIH budget increased by twelve billion
during Trump's term due to bipartisan support. Programs like the
twenty first Century Curies Act, which funds Alzheimer's and rare
(13:23):
disease research, remained intact. And what was the impact on
Huntington's disease research. While Congress protected NIH funding, Trump's proposals
created uncertainty. Advocacy groups like the Huntington's Disease Society of
America warned that cuts would stall clinical trials and biomarker studies,
(13:44):
and the ni NDS funding the NIAH Institute supporting HD
research grew modestly during Trump's term, but proposed cuts threatened
long term projects. So now I want to We've talked
(14:05):
about the past and it's history, and we're all good, right,
But now it's twenty twenty five and Donald Trump's presidency
has is its infancy again. Now, he has not released
(14:28):
a detailed policy blueprint for the twenty twenty four to
twenty twenty five fiscal years. As his well, his campaign
focused on broader themes like immigration, energy, and reducing federal regulations.
And you know, there's been some other things you know
in the news which we've all seen, but so but
(14:51):
basically we want to keep it focused on research because
that's what's important to all of us. So, based on
on his past proposals, and like I said before, you
the best predictor of future behavior is past behavior. So
based on his past proposals, statements from allies, and conservative
(15:14):
policy frameworks like Project twenty twenty five, which is a
Heritage Foundation led initiative, there are strong indications that a
potential second Trump administration could revive efforts to cut non
defense discretionary spending, including federal research funding. So you know,
(15:35):
we're going to talk about that now. So his campaign,
you can judge a lot by a candidate's campaign at
the time, he's no longer a candidate. He's the president.
And so let's talk about Agenda forty seven proposals. Trump's
(15:57):
campaign platform emphasizes slashing federal bureaucracy. And redirecting funds to
priorities like immigration enforcement and fossil fuel development. While not
explicitly targeting the National Institute of Health, his calls for
eliminating wasteful spending align with past attempts to cut research
(16:18):
budgets and Project twenty twenty five. This conservative policy roadmap,
endorsed by Trump allies, proposes a ten to fifteen percent
cut to non defense discretionary spending, which includes agencies like
the NIH and NSF. It criticizes federal support for politicized science,
(16:42):
which could jeopardize grants for diseases like HD. So the
potential impact on the ANIH and HD research is If
his past proposals and Project twenty twenty five are implemented,
a ten to fifteen percent reduction would strip the NIH
(17:02):
of four to six billion dollars. Programs like the National
Institute of Neurological Disorders and Stroke or ni NDS, which
allocated eighty one million to HD research in twenty twenty three,
could see reduced grants. Clinical trials would be at risk,
such as HD therapies, gene silencing, crisper based treatments, rely
(17:26):
on NIH funded infrastructure, including the HDSA Centers of excellence.
Cuts could slow enrollment or halt trials altogether, and also
young researchers, which we desperately need. We need these young
researchers so early. Early career scientists who depend on NIH
(17:46):
grants like our ones might abandon HD research altogether for
more stable fields. So the specific threats to Huntington's disease
are biomarker development. NIH funds critical work to identify biomarkers
for HD progression, which are essential for clinical trials. Delays
(18:08):
here would push back drug approvals. The rare disease prioritization
HD effects approximately forty thousand. We all know what's higher,
but you know, I can remember when it was thirty thousand.
Well it's they say forty thousand now, but making it
politically vulnerable compared to more prevalent diseases. Advocacy groups like
(18:29):
HDSA warn that reduced NIH funding would disproportionately harm rare
disease research and global collaboration. Trump's past skepticism of international partnerships.
For example, the proposed NIH global health cuts could weaken
collaborations like the European Huntington's Disease Network, which shares data
(18:53):
with US researchers also counter vailing forces congressional push. Congress
has historically shielded INNIH funding. Bipartisan support for rare diseases,
for example, the twenty first Century Cures Act could continue,
especially with HD advocates like Representative Adam Schiff, a Democrat
(19:16):
from California, lobbying for research. Private funding organizations like the
HDI Foundation, which spends one hundred million dollars a year
on HD research, and pharmer partnerships for example, Wave Life
Sciences and Roche might fill some gaps, but they cannot
replace the National Institute of Health scale. They just they
(19:37):
have so much money and or they did have. So
Trump's rhetoric, we all know that he says things okay
but and versus reality. So while Trump has not explicitly
mentioned cutting HD research, his broader agenda suggests that there
are risks. For instance, his in his campaigns be which
(20:00):
is in twenty twenty four, Trump has criticized federal spending
on woke policies and endless wars, but not directly has
not directly attacked medical research. However, his emphasis on austerity
could indirectly threaten NIH. And if you don't know, for
those of you that don't know what austerity is means
(20:20):
cuts like cuts to the budget. So past president in
twenty seventeen to twenty one Trump's budgets proposed NIH cuts,
but Congress reversed them. A second term with a GOP
controlled Congress might increase the likelihood of cuts passing. So anyway,
(20:45):
So in conclusion of that, so a Trump administration in
twenty twenty four to twenty twenty five could pose risks
to HD research through proposed NIH cuts, though Congress and
advocacy group efforts might mitigate them. The uncertainty alone could
deter long term research planning for HD families. The stakes
are high. Slowed research could delay life changing therapies. Now
(21:19):
I want to continue on because we have to look
at all the whole, the whole broader thing of what
is about to happen or could happen, you know, now
that we have a new administration. So I would like to,
(21:39):
you know, focus on finally the tariffs, the tariffs that
have been imposed as of today on Canada and Mexico
as well as China. But we're going to focus on
on Canada and Mexico, but indirectly threaten Huntington's disease research
(22:04):
because it would disrupt cross border collaboration, which would increase
costs for critical supplies, and it would strain the broader
scientific ecosystem. So what does that mean. Well, first of all,
it means increased costs for research materials, so, for instance,
lab equipment and reagents. Many research tools example like specialized
(22:29):
lab equipment, antibodies, crisper reagents are imported into the United States.
Tariffs could raise costs for US for the US, Canadian
or Mexican institutions diverting funds, which would divert funds from
HD projects. For example, Canadian biotech firms like stem Cell
(22:51):
Technologies supply reagents used in HD research, so US labs
would be paying paying higher TEAR might reduce their orders
or see cost cutting measures. Also, critical trial supplies would
be affected. Clinical trials for HD therapies often rely on
(23:12):
globally sourced materials for example, placebo controls, gene therapy vectors.
Tariffs could probably will delay or inflate. They definitely will
inflate trial costs. It would it would cause disruption of
cross border collaboration shared research infrastructure, so North American HD
(23:36):
consortias such as the Huntington Study Group HSG, depend on
seamless collaboration. Tariffs could strain partnerships if institutions face budget
shortfalls or logistical hurdles. So you know, there's there's more
to this, you know, than than what we just you know,
us a little peons. You know what we know? Okay,
(23:59):
So data and sample sharing, cross border transfer a patient data,
biospecimens or genetic material critical for HD. Biomarker studies might
face delays or added bureaucracy if trade tensions escalate, and
they probably will escalate, so there's economic ripple effects, so
(24:24):
government austerity measures. If tariff's harm economies, governments might reduce
research funding. For example, Canada CIHR, the Canadian Institute of
Health Research, and Mexico's con acyt or connoissant. I'm not
sure if I'm pronouncing that right, but fund HD studies.
(24:44):
Budget cuts could shrink these programs. The US and IH grants,
which support fifty percent of all HD research, might face
pressure if federal budgets prioritize offsetting teriff related economic losses,
which there will be. There's not a doubt. They've warned
of harder times, especially in the United States, you know,
(25:08):
because of this and anyway, so pharmaceutical partnerships companies like
t have A Pharmaceuticals with operations in Mexico or Voyager
Therapeutics collaborating with Canadian firms could scale back HD investments
due to trade uncertainty. And so this isn't just a
(25:31):
raw raw you know, like let's do this, you know this,
there are real effects that are going to happen to
the HD community because of this, Indirect threats to talent
and innovation, researcher mobility. Strained US Canada Mexico relations might
lead to stricter visa policies, hindering recruitment of international scientists
(25:54):
for HD projects. That's that's a real threat to UH
progressing in HD research and are and what we look
at as a pathway to a cure that that that
definitely is It could could cause harm also a brain drain.
(26:16):
Talented researchers in Canada or Mexico might relocate to regions
with more stable funding environments. Weaking North America's HD research network. Well,
we're already noticing that here because we could tell that
there were students that are no longer going to be
(26:38):
coming to Canada for their education for instance. Uh, international students,
it's it's pretty much being wiped out. So that's a
very real thing that's going to happen elsewhere as well.
So there is a brain drain. So, uh, here's a
(27:00):
case study with USMCA, which is the United States, Mexico
and Canada trade agreement that replace NAFTA and scientific cooperations.
So the US Mexico Canada Agreement includes provisions for scientific collaboration.
Tariffs could undermine this framework by reducing incentives for joint
funding initiatives, trilateral grants for rare diseases, creating mistrust that
(27:24):
spills over into the data sharing agreements or intellectual property disputes.
So there's again there's there's more to this. So the
mitigating factors are bilateral exemptions. Medical research supplies might be
exempted from tariffs, as seen in past US China trade disputes. However,
(27:45):
we know that that's not the case now because we've
already been told that it's across the board that everything
that comes safe from Canada and Mexico is now under tariff.
So we know that there's no might be exempted. That's no,
that's not happening. It's everything across the board. Embassy groups
(28:07):
like the Huntington's Disease Society of America could lobby for
such exemptions. Well, it happened so fast, I don't think
there was time to do that. So private funding resilience
nonprofits like the HDI Foundation, which funds around seventy five
percent of global HD research, and industry partnerships might buffer
(28:31):
against public funding cuts, So that might be helpful. But
as it said before, the NIH is really it's really
the boss when it comes to this, because they're the
ones that fund fifty percent of everything in the United
States as far as medical research. So let me see here. So,
(28:56):
while not a direct target, all right, this is the
summit that HD research could suffer collateral damage from US
tariffs on Canada and Mexico through increased costs, disrupted collaboration,
and economic ripple effects. Advocacy for research exemptions and leveraging
(29:17):
private funding would be critical to mitigate mitigating the risks.
So this is all taken from reputable sources in mostly
in the United States, from HDSA to the NIH. It's
that's where all this information comes from. This is not
(29:40):
like some news article or whatever. None of that is.
It's all HSG Wilson Center Analysis, Biotechnology Innovation Organization Report.
That's it's it's all here. This is real stuff. And
I'm thinking, you know, it may sound ound negative, I
(30:02):
should say, and not so much hopeful. The only the
only thing is that there is a bunch of stuff
coming through the pipe. You know, we do have a
lot of things going on. I just hope that none
of this slows down the future trials and so on,
or development of therapies that would come up, would normally
(30:27):
have come up over the next four years. We've seen
a lot in the in the past. In these past
couple of years, we've seen a lot come forward, right
I and and I just hope that nothing is going
to be stifled stifled due to you know, policies that
(30:49):
may seem drastic and which we cause uncertainty. We don't
need uncertainty in the HD organize, in our you know,
the h D community. Now we're all looking for there's
a lot of people that need relief. Let's put it
that way, and hopefully, uh, you know what they what's
(31:12):
at sand commer heads will prevail and that it can
get worked out in the near future, so that no
one has to suffer any longer than what is absolutely necessary.
Let's see what happens. So I hope I didn't bore
(31:34):
you with a lot of stuff. I tried to keep
it as short as I could, but I just you know,
I'll leave it at that, and i'd just like to
say in closing, as always, you are loved.
It's time to speak up, It's time to speak out.
Welcome to We Have a Voice Community discussions about Huntington's
Disease and juvenile Huntington's Disease. Show host James Valvano, you
are loved. Hello, and welcome to We Have a Voice Radio.
(00:42):
My name is Kevin Jess and I'll be your host today.
I wanted to come on. I haven't come on in
a long while, and so I just wanted to come
on and touch on some you know, the things that
are going on right now. And it is, you know,
the beginning of of still you know, at the beginning
(01:02):
of twenty twenty five. We're now February first, and and
but you know, I wanted to wait until the new
government forms in the United States before I said anything
at all. And I want to remind that this is
not in any way a political show. I am neutral,
(01:28):
so I do not engage in political stunts or what
have you. What I wanted to talk about is what
are what could we? What could we? Because you know
you can't you can't predict the future, but what you
(01:50):
the best predictor of future events are past events or
the same as you do with behavior, the best predictor
of future behavior is past behavior. So I wanted to
talk about the state of of what could happen, uh
(02:12):
now with funding for Huntington's disease research now that there's
a new government in the United States. And I say,
and I say that because it's important, because I mean,
the United States is is of prime Uh. You know,
they've got the money, they're gonna you know, they can
they can do things that other governments around the world
(02:34):
cannot simply just because they have they have the bus,
you know. But nevertheless, so let's look at the past
and and then we'll jump to to now. So what
I wanted to know is how Trump era policy, so
(02:58):
the the four years that he was president before could
have impacted medical research, in particular with Huntington's disease. So
from twenty seventeen to twenty twenty one, that's really what
I'm looking at here is there were Trump administration's budget
(03:19):
proposals between twenty seventeen and twenty twenty one repeatedly targeted
the National Institutes of Health of the NIH for cuts.
For instance, in twenty twenty one, it was a seven
percent reduction three billion cut, including illuminating one point four
billion from NIH's core program grants in twenty twenty. Just
(03:41):
before that, they sought a four point five billion dollar
cut from the National Institute of Neurological Disorders and Stroke,
a key funder of Huntington's disease research. Now what the
impact would that have? Well, reduced grants or NIH funds
(04:01):
are fifty percent of US biomedical research, including HD projects.
Cuts would have reduced the number of grants awarded, stalled
clinical trials for example, gene silencing therapies like tminousent treminison,
and delayed biomarker discovery critical for tracking HD progression. And
(04:22):
then there's the nin DS role. NNDS allocated eighty one
million to HD research in twenty twenty. Proposed cuts threatened
the initiatives like the HD Human Biomarkers Project, which identifies
tools to measure drug efficacy. Also, it affected young researchers.
(04:42):
Early career scientists often rely on NIH grants. Example, RO
one grants reduced funding risk, driving talent away from HD research. However,
what really happened with that, Well, Congress largely reject did
the NIH cuts, but the political uncertainty had indirect effects.
(05:05):
The twenty eighteen omnibus bill Congress increased ONIH funding by
three billion, including four hundred million for Alzheimer's and related dementias.
HD shares some research pathways in that so continuing resolutions.
Frequent government shut down threats and stop gap funding bills
(05:27):
disrupted grant cycles. Researchers faced delays in starting projects or
hiring staff. For instance, the Huntington's Disease Collaborative Research Group,
which relies on multi year NIH grants, warned that funding
instability could fracture international consortia pooling HD patient data. So
(05:48):
the specific risks to Huntington's disease research. It's in a
critical phase with therapies like gene silencing and crisper approach
based approaches nearing clinical application. So we know we've seen
and we see it. If you're on Facebook at all,
you see all the stuff like I've never seen the
(06:09):
amount of stuff that's been happening, and it's wonderful. But
for instance, federal cuts would have delayed clinical clinical trials.
Trials like precision HD testing to Minerson depend depend on
NIIH supported infrastructure, including HDSA Centers of Excellence. It would
(06:30):
have halted basic science NIH funds foundational studies such as
the Huntington's Disease Youth Organization or HDYO Brain Donation Program,
which advances understanding of early HD mechanisms, and it would
have reduced patient access. The NIH supports the HD Clinical Network,
which provides care and clinical trial recruitment. Cuts could shrink
(06:54):
this network disproportionately affecting rural patients. So it also affected
tax policy and philanthropic funding. The twenty seventeen Tax Cuts
and Jobs Act raised the standard deduction, leading to fewer
taxpayers itemizing deductions. This reportedly reduced charitable charitable giving by
(07:16):
twenty two billion dollars in twenty eighteen, into impacting nonprofits
like the Huntington's Disease Society of America HDSA funding supports
caregiver resources and seed grants for researchers. The HDI Foundation,
a privately funded nonprofit that spends one hundred million dollars
annually on HD research. While HDI fills gaps, it cannot
(07:42):
replace the NIHS scale. It affected immigration, so immigration policies
and a talent drain. Now, I know there's a lot
of anti immigrants, you know, stuff out there, but stricter
visa polses, Finnish's H one B restrictions and rhetoric discouraged
(08:05):
international research from working in the United States. Examples, graduate students.
In twenty twenty, forty percent of US biomedical graduate students
were international. Delays in visas or optional practical training approvals
disrupted labs studying HD genetics, collaboration barriers. The NIH is
(08:27):
Undiagnosed Diseases Network, which includes HD studies, relies on global
data sharing, travel bands and visa denials slowed those partnerships. Also,
advocacy and adaptation qHD Advocacy HDSA organized grassroots campaigns, leading
(08:48):
Congress to designate June as National Huntington's Disease Awareness Month
in twenty twenty. Oh, I'm sorry, that's may so. Also
public private partnerships. The HD Regulatory Science Consortium, funded by
NAH and HDI accelerated trial design frameworks and global collaboration.
(09:11):
The European Huntington's Disease Network expanded data sharing with US
researchers to mitigate funding gaps. So what are the long
term implications? Well, Congress ultimately protected in NIH funding, so
that didn't happen, But the repeated proposals created a chilling effect.
Researchers spent time lobbying instead of focusing on science. So
(09:35):
it was wasting their time by having to go to
the government constantly trying to get money to do these projects,
and so that did have an effect. It slows things down.
Pharmaceutical companies grew wary of investing in rare diseases without
any federal partnership, and patients faced prolonged weights for therapies.
(09:57):
HD has no cure and delays directly impact quality of life.
So the takeaway there is that HD research depends on stable,
predictable funding. Even temporary uncertainty can derailed decades of progress.
So that was that was then. So has the new
(10:27):
presidency in the United States. Has it directly said anything
that said like we're gonna halt you know, Huntington's disease research. No, No,
that's not what has happened. He did not always explicitly
single out medical research either in speeches. His budget proposals
(10:50):
and public remarks on spending. Federal spending made his administration's
priorities clear, so the proposals were like in twenty eighteen,
he proposed a seven point two billion dollar dollar cut
to the national instead of health, including eliminating the Fogerty
(11:11):
International Center, which funds global health research. Twenty twenty budget
saw a four point five billion dollar cut. In twenty
twenty one a three billion dollar cut. Again, it didn't
happen because they didn't have control of the entire control
of everything in the government. But that has changed, of course,
(11:35):
now they do. They have control of all the forms
of branches of government. I should say, so, what has
he said personally his public remarks on research funding. He's
rarely done it. He's rarely discussed medical research and detail.
(11:56):
But he did make several remarks criticizing the federal spending
and specific projects. In a twenty seventeen speech, Trump mocked
ANIH funded studies on how mice react to cocaine and
the monitoring of male prostitutes in Vietnam as examples of
wasteful spending. One of these comments were criticized by scientists,
(12:16):
who note that such studies often addressed addiction and public
health crises. Also in twenty twenty COVID nineteen press briefings,
Trump praised nih scientists, for example doctor Anthony Fauci, but
also suggested pharmaceutical companies should go it alone without federal partnerships,
(12:39):
reflecting skepticism about government funded research. So we see here,
I'm having to, you know, to read this, and I'm
just wanting to make sure that I'm following this along correctly.
(13:01):
But Congress, so including many Republicans, rejected most of these
proposed cuts, and the NIH budget increased by twelve billion
during Trump's term due to bipartisan support. Programs like the
twenty first Century Curies Act, which funds Alzheimer's and rare
(13:23):
disease research, remained intact. And what was the impact on
Huntington's disease research. While Congress protected NIH funding, Trump's proposals
created uncertainty. Advocacy groups like the Huntington's Disease Society of
America warned that cuts would stall clinical trials and biomarker studies,
(13:44):
and the ni NDS funding the NIAH Institute supporting HD
research grew modestly during Trump's term, but proposed cuts threatened
long term projects. So now I want to We've talked
(14:05):
about the past and it's history, and we're all good, right,
But now it's twenty twenty five and Donald Trump's presidency
has is its infancy again. Now, he has not released
(14:28):
a detailed policy blueprint for the twenty twenty four to
twenty twenty five fiscal years. As his well, his campaign
focused on broader themes like immigration, energy, and reducing federal regulations.
And you know, there's been some other things you know
in the news which we've all seen, but so but
(14:51):
basically we want to keep it focused on research because
that's what's important to all of us. So, based on
on his past proposals, and like I said before, you
the best predictor of future behavior is past behavior. So
based on his past proposals, statements from allies, and conservative
(15:14):
policy frameworks like Project twenty twenty five, which is a
Heritage Foundation led initiative, there are strong indications that a
potential second Trump administration could revive efforts to cut non
defense discretionary spending, including federal research funding. So you know,
(15:35):
we're going to talk about that now. So his campaign,
you can judge a lot by a candidate's campaign at
the time, he's no longer a candidate. He's the president.
And so let's talk about Agenda forty seven proposals. Trump's
(15:57):
campaign platform emphasizes slashing federal bureaucracy. And redirecting funds to
priorities like immigration enforcement and fossil fuel development. While not
explicitly targeting the National Institute of Health, his calls for
eliminating wasteful spending align with past attempts to cut research
(16:18):
budgets and Project twenty twenty five. This conservative policy roadmap,
endorsed by Trump allies, proposes a ten to fifteen percent
cut to non defense discretionary spending, which includes agencies like
the NIH and NSF. It criticizes federal support for politicized science,
(16:42):
which could jeopardize grants for diseases like HD. So the
potential impact on the ANIH and HD research is If
his past proposals and Project twenty twenty five are implemented,
a ten to fifteen percent reduction would strip the NIH
(17:02):
of four to six billion dollars. Programs like the National
Institute of Neurological Disorders and Stroke or ni NDS, which
allocated eighty one million to HD research in twenty twenty three,
could see reduced grants. Clinical trials would be at risk,
such as HD therapies, gene silencing, crisper based treatments, rely
(17:26):
on NIH funded infrastructure, including the HDSA Centers of excellence.
Cuts could slow enrollment or halt trials altogether, and also
young researchers, which we desperately need. We need these young
researchers so early. Early career scientists who depend on NIH
(17:46):
grants like our ones might abandon HD research altogether for
more stable fields. So the specific threats to Huntington's disease
are biomarker development. NIH funds critical work to identify biomarkers
for HD progression, which are essential for clinical trials. Delays
(18:08):
here would push back drug approvals. The rare disease prioritization
HD effects approximately forty thousand. We all know what's higher,
but you know, I can remember when it was thirty thousand.
Well it's they say forty thousand now, but making it
politically vulnerable compared to more prevalent diseases. Advocacy groups like
(18:29):
HDSA warn that reduced NIH funding would disproportionately harm rare
disease research and global collaboration. Trump's past skepticism of international partnerships.
For example, the proposed NIH global health cuts could weaken
collaborations like the European Huntington's Disease Network, which shares data
(18:53):
with US researchers also counter vailing forces congressional push. Congress
has historically shielded INNIH funding. Bipartisan support for rare diseases,
for example, the twenty first Century Cures Act could continue,
especially with HD advocates like Representative Adam Schiff, a Democrat
(19:16):
from California, lobbying for research. Private funding organizations like the
HDI Foundation, which spends one hundred million dollars a year
on HD research, and pharmer partnerships for example, Wave Life
Sciences and Roche might fill some gaps, but they cannot
replace the National Institute of Health scale. They just they
(19:37):
have so much money and or they did have. So
Trump's rhetoric, we all know that he says things okay
but and versus reality. So while Trump has not explicitly
mentioned cutting HD research, his broader agenda suggests that there
are risks. For instance, his in his campaigns be which
(20:00):
is in twenty twenty four, Trump has criticized federal spending
on woke policies and endless wars, but not directly has
not directly attacked medical research. However, his emphasis on austerity
could indirectly threaten NIH. And if you don't know, for
those of you that don't know what austerity is means
(20:20):
cuts like cuts to the budget. So past president in
twenty seventeen to twenty one Trump's budgets proposed NIH cuts,
but Congress reversed them. A second term with a GOP
controlled Congress might increase the likelihood of cuts passing. So anyway,
(20:45):
So in conclusion of that, so a Trump administration in
twenty twenty four to twenty twenty five could pose risks
to HD research through proposed NIH cuts, though Congress and
advocacy group efforts might mitigate them. The uncertainty alone could
deter long term research planning for HD families. The stakes
are high. Slowed research could delay life changing therapies. Now
(21:19):
I want to continue on because we have to look
at all the whole, the whole broader thing of what
is about to happen or could happen, you know, now
that we have a new administration. So I would like to,
(21:39):
you know, focus on finally the tariffs, the tariffs that
have been imposed as of today on Canada and Mexico
as well as China. But we're going to focus on
on Canada and Mexico, but indirectly threaten Huntington's disease research
(22:04):
because it would disrupt cross border collaboration, which would increase
costs for critical supplies, and it would strain the broader
scientific ecosystem. So what does that mean. Well, first of all,
it means increased costs for research materials, so, for instance,
lab equipment and reagents. Many research tools example like specialized
(22:29):
lab equipment, antibodies, crisper reagents are imported into the United States.
Tariffs could raise costs for US for the US, Canadian
or Mexican institutions diverting funds, which would divert funds from
HD projects. For example, Canadian biotech firms like stem Cell
(22:51):
Technologies supply reagents used in HD research, so US labs
would be paying paying higher TEAR might reduce their orders
or see cost cutting measures. Also, critical trial supplies would
be affected. Clinical trials for HD therapies often rely on
(23:12):
globally sourced materials for example, placebo controls, gene therapy vectors.
Tariffs could probably will delay or inflate. They definitely will
inflate trial costs. It would it would cause disruption of
cross border collaboration shared research infrastructure, so North American HD
(23:36):
consortias such as the Huntington Study Group HSG, depend on
seamless collaboration. Tariffs could strain partnerships if institutions face budget
shortfalls or logistical hurdles. So you know, there's there's more
to this, you know, than than what we just you know,
us a little peons. You know what we know? Okay,
(23:59):
So data and sample sharing, cross border transfer a patient data,
biospecimens or genetic material critical for HD. Biomarker studies might
face delays or added bureaucracy if trade tensions escalate, and
they probably will escalate, so there's economic ripple effects, so
(24:24):
government austerity measures. If tariff's harm economies, governments might reduce
research funding. For example, Canada CIHR, the Canadian Institute of
Health Research, and Mexico's con acyt or connoissant. I'm not
sure if I'm pronouncing that right, but fund HD studies.
(24:44):
Budget cuts could shrink these programs. The US and IH grants,
which support fifty percent of all HD research, might face
pressure if federal budgets prioritize offsetting teriff related economic losses,
which there will be. There's not a doubt. They've warned
of harder times, especially in the United States, you know,
(25:08):
because of this and anyway, so pharmaceutical partnerships companies like
t have A Pharmaceuticals with operations in Mexico or Voyager
Therapeutics collaborating with Canadian firms could scale back HD investments
due to trade uncertainty. And so this isn't just a
(25:31):
raw raw you know, like let's do this, you know this,
there are real effects that are going to happen to
the HD community because of this, Indirect threats to talent
and innovation, researcher mobility. Strained US Canada Mexico relations might
lead to stricter visa policies, hindering recruitment of international scientists
(25:54):
for HD projects. That's that's a real threat to UH
progressing in HD research and are and what we look
at as a pathway to a cure that that that
definitely is It could could cause harm also a brain drain.
(26:16):
Talented researchers in Canada or Mexico might relocate to regions
with more stable funding environments. Weaking North America's HD research network. Well,
we're already noticing that here because we could tell that
there were students that are no longer going to be
(26:38):
coming to Canada for their education for instance. Uh, international students,
it's it's pretty much being wiped out. So that's a
very real thing that's going to happen elsewhere as well.
So there is a brain drain. So, uh, here's a
(27:00):
case study with USMCA, which is the United States, Mexico
and Canada trade agreement that replace NAFTA and scientific cooperations.
So the US Mexico Canada Agreement includes provisions for scientific collaboration.
Tariffs could undermine this framework by reducing incentives for joint
funding initiatives, trilateral grants for rare diseases, creating mistrust that
(27:24):
spills over into the data sharing agreements or intellectual property disputes.
So there's again there's there's more to this. So the
mitigating factors are bilateral exemptions. Medical research supplies might be
exempted from tariffs, as seen in past US China trade disputes. However,
(27:45):
we know that that's not the case now because we've
already been told that it's across the board that everything
that comes safe from Canada and Mexico is now under tariff.
So we know that there's no might be exempted. That's no,
that's not happening. It's everything across the board. Embassy groups
(28:07):
like the Huntington's Disease Society of America could lobby for
such exemptions. Well, it happened so fast, I don't think
there was time to do that. So private funding resilience
nonprofits like the HDI Foundation, which funds around seventy five
percent of global HD research, and industry partnerships might buffer
(28:31):
against public funding cuts, So that might be helpful. But
as it said before, the NIH is really it's really
the boss when it comes to this, because they're the
ones that fund fifty percent of everything in the United
States as far as medical research. So let me see here. So,
(28:56):
while not a direct target, all right, this is the
summit that HD research could suffer collateral damage from US
tariffs on Canada and Mexico through increased costs, disrupted collaboration,
and economic ripple effects. Advocacy for research exemptions and leveraging
(29:17):
private funding would be critical to mitigate mitigating the risks.
So this is all taken from reputable sources in mostly
in the United States, from HDSA to the NIH. It's
that's where all this information comes from. This is not
(29:40):
like some news article or whatever. None of that is.
It's all HSG Wilson Center Analysis, Biotechnology Innovation Organization Report.
That's it's it's all here. This is real stuff. And
I'm thinking, you know, it may sound ound negative, I
(30:02):
should say, and not so much hopeful. The only the
only thing is that there is a bunch of stuff
coming through the pipe. You know, we do have a
lot of things going on. I just hope that none
of this slows down the future trials and so on,
or development of therapies that would come up, would normally
(30:27):
have come up over the next four years. We've seen
a lot in the in the past. In these past
couple of years, we've seen a lot come forward, right
I and and I just hope that nothing is going
to be stifled stifled due to you know, policies that
(30:49):
may seem drastic and which we cause uncertainty. We don't
need uncertainty in the HD organize, in our you know,
the h D community. Now we're all looking for there's
a lot of people that need relief. Let's put it
that way, and hopefully, uh, you know what they what's
(31:12):
at sand commer heads will prevail and that it can
get worked out in the near future, so that no
one has to suffer any longer than what is absolutely necessary.
Let's see what happens. So I hope I didn't bore
(31:34):
you with a lot of stuff. I tried to keep
it as short as I could, but I just you know,
I'll leave it at that, and i'd just like to
say in closing, as always, you are loved.
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