Barbara Collura, President and CEO of RESOLVE: The National Infertility Association, spoke with ForbesWomen editor Maggie McGrath about the job cuts at the U.S. Department of Health and Human Services and what it means for the division of the CDC specifically dedicated to studying infertility and IVF.
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NewsTranscript
00:00Hi everyone, I'm Maggie McGrath, editor of Forbes Women.
00:07On Tuesday, massive job cuts hit the U.S. Health and Human Services Department, slashing
00:12thousands of jobs from the CDC, FDA, and NIH.
00:17Within these cuts, the CDC has eliminated its entire team focused on assisted reproductive
00:26technology.
00:27Joining us to explain what this means for fertility treatment around the country is
00:31Barbara Kalora.
00:33She is the CEO of RESOLVE, the National Infertility Association.
00:37Barbara, thank you so much for joining us.
00:40Thank you for having me.
00:42So we're seeing reports of thousands of workers laid off from the Department of Health and
00:46Human Services.
00:47Many of those are within the CDC, and within that, there is this Office of Assisted Reproductive
00:52Technology.
00:54Broadly speaking, what does this mean?
00:56Well, this is a group of six people.
01:00That's it.
01:01Six people.
01:02But they were the team at the CDC, again, our nation's public health agency, that worked
01:07on infertility and in vitro fertilization, or IVF.
01:11In fact, their office was mandated by Congress in 1992.
01:16In other words, Congress passed a law that said CDC must collect this information on
01:22every IVF cycle, and they must report that to the public.
01:26So this office has been working under a congressional mandate for all of those years.
01:32And that entire team, again, only six people, have been let go.
01:36You mentioned thousands were let go.
01:38So you think about it, just this tiny, small group, yet they are the only ones at the CDC
01:46who worked on infertility and IVF.
01:48And one in six people globally are impacted by infertility.
01:54So that knowledge is now, like, gone.
01:56It's walked out the door.
01:58There isn't anybody at the CDC who now works on or knows anything about infertility or
02:03IVF.
02:05There's no one at the Center for Disease Control who knows about fertility and IVF.
02:12What about at the NIH?
02:13Or does that not matter?
02:15Well, I'm taking a deep breath because it's still hard for me.
02:20I've worked with these people for years.
02:22This is a division within the CDC that is very, very important to us and our community.
02:29And so at the NIH, the institute that worked on infertility and also human reproduction
02:37is called the National Institute for Child Health and Human Development, or NICHD.
02:44I've learned that their director of the entire institute was let go yesterday, Dr. Diana
02:50Bianchi.
02:52But there are folks within NICHD that do research and also fund research on infertility.
03:00I have yet to learn their fate, but already I can tell you their ranks were very small.
03:07You mentioned that a congressional mandate developed the Assisted Reproductive Health
03:12team within the CDC.
03:14Are these cuts, especially of the six people that you mentioned, are those technically
03:18against the law?
03:21I'm not a lawyer, but yes, I would say that that is the case.
03:26If Congress has said, you must do this, and you must do this every year, and you must
03:32collect this data, and you must report on this data, that's Congress mandating you to
03:38do something, which is, it's a law.
03:41So you've talked about data.
03:43We've talked about research.
03:44Let's get into the nitty-gritty ramifications of these six people losing their jobs.
03:49What will be, I guess, let's look at the first 30 days, 60 days.
03:54What will be the immediate near-term impact of these jobs not existing?
03:59It's a great question.
04:00And I would just say that, first of all, you've got a group of people that collect all this
04:06data from all of the clinics across the country.
04:09They contract out to a company to do all of the number crunching, and then they analyze
04:16that data.
04:17That's then put on the CDC website.
04:20So I've actually spoken to some of the team since they've been laid off.
04:26They're making the assumption that the contract has ended.
04:29Who's going to work with those folks?
04:32They don't know.
04:33There's nobody at CDC who knows that.
04:35So I think in the immediate, we probably won't feel something immediately.
04:42But all that data collection and all that work is going to stop.
04:46I think that probably means that, because they're always about a year behind, when you
04:51think about IVF, you're looking at what are the outcomes.
04:55We've got nine months of pregnancy, et cetera.
04:57So these things are always about a year out.
05:00So I would say that we're probably going to not have the data from the last year that
05:06they've collected.
05:07That usually comes out at some point near the end of the year.
05:11We won't have that at all.
05:12And then one of the things that this group did is they took that data, and they would
05:18produce research.
05:19And that research has really helped the field advance.
05:23So that's going to all stop.
05:25I don't know, quite honestly, who's going to be managing the content on the CDC website
05:31as it relates to infertility and IVF, because that was this particular group.
05:36So I will keep an eye on it and see if that data becomes stale and old.
05:42But certainly for patients who use this information, this was publicly available.
05:48It was meant for transparency.
05:49It was meant for patient access.
05:54And that is gone now.
05:55Wow.
05:56So eventually, we could have these websites that just are not up to date with the science.
06:03And I wonder, as we think about sources of research, data collection, information gathering,
06:09is there a private sector equivalent who could step in?
06:12I mean, these layoffs happened yesterday.
06:14So if it's a year, is there time for an institute on the private side to step in and pick up
06:22the baton?
06:23Actually, there is.
06:25It's the Society for Assisted Reproductive Technology.
06:28It's the physicians, the clinics.
06:31And they collect data, and they can fill this void.
06:35We've got to make sure patients know to go there.
06:38Going to the CDC is where everyone kind of goes when they get their public health information.
06:43So we've got to direct folks to that data now and that information.
06:48So I'm actually less concerned about some of that IVF success collection data.
06:56What I am concerned about is other ways that this particular group of people served as
07:01a resource within our federal government.
07:03A couple of examples that I know of, a couple of years ago, the Office of Personnel Management,
07:09which is kind of the HR department for federal employees, they wanted to add an IVF insurance
07:15benefit for federal employees.
07:17What did they do?
07:18They call this group at the CDC.
07:21They had them provide a briefing to them on infertility, on IVF, and all that information
07:27as they should.
07:28It's government to government.
07:29It's within their own resources.
07:34We know that members of Congress get asked about infertility from their constituents,
07:40and they call this group at the CDC.
07:43And they say, hey, I have a constituent who's asking me about what we're doing at the federal
07:47government about infertility.
07:49So they are a resource within the entire ecosystem of our federal government.
07:55And now that is gone.
07:58That's one of the ramifications or downstream effects of these six people being fired.
08:04I wonder, what are the other, perhaps lesser recognized, ramifications that could happen?
08:11I'm thinking about family planning information or programs.
08:19What are the other things that we're losing sight of because we're looking at IVF and
08:23looking at the big headlines here?
08:25Well, you know, when you have a group of people that are experts on infertility and IVF within
08:32the CDC, within our government, they were constantly building bridges.
08:38So for example, there is an STD group within CDC.
08:42Quite honestly, I don't know if they survived yesterday.
08:45There are some STDs that could cause infertility.
08:49They would work hand-in-hand on disseminating that information.
08:53What does the data show?
08:54Again, all of that evidence-based information.
08:57They worked very closely with the folks at NIH, the Office of Women's Health at HHS.
09:04So it's a small group of people overall, but they all worked really well together and
09:10provided an exchange of data and information to elevate the field.
09:16One of the things that I know they were working on was expanding access to IVF.
09:22They were looking at data from different states that had insurance mandates for IVF, looking
09:28at utilization, looking at outcomes, and then being able to put that research out there
09:33and say, actually having an IVF mandate is a very good thing.
09:37So they are doing a number of different things that now, I don't know where that's going
09:45to come from.
09:46We're going to, as a community, we're going to have to figure that out.
09:50Earlier this year, President Trump had referred to himself as the Fertilization President.
09:58I'd love your reaction to that in light of the cuts that we saw yesterday.
10:03Well, President Trump talked about IVF on the campaign trail.
10:09We were very surprised when he mentioned last year that he wanted to see IVF free.
10:16He said, I want everyone to be able to access IVF for free or your insurance pay for it.
10:24So he has really leaned in to expanding access to IVF.
10:29In fact, in February, he came out with an executive order that's asking his domestic
10:37policy counsel to come up with recommendations, policy recommendations.
10:41I was thinking about this yesterday when I was talking to the folks at CDC that got laid
10:47off, and they said it and I said it.
10:51They are a resource for the President in order to fulfill these policy recommendations.
11:00They are a resource to the Secretary of HHS, to the White House.
11:04If we're going to lean all in on IVF, as President Trump has said, why get rid of the people
11:10closest to you who know the most?
11:13So I honestly, you know, look, it was 10,000 or so people at HHS.
11:18This is six people.
11:19Maybe it was a mistake.
11:20Maybe no one knows that what they were doing at the White House.
11:23But I think we've just let some folks go that could be a valuable resource to the President
11:29as he wants to expand IVF.
11:31This is the group that can help them do that.
11:35I was just about to ask, what is the chance that these cuts get undone and that these
11:41workers are invited back to their positions in the near term or a month from now, two
11:46months from now?
11:47I am raising, I am raising the alarm that you've just let go the knowledge walked out
11:56the door that helped you the most in doing exactly what you want to do with this executive
12:02order.
12:03So let's rethink this because these are the folks that can really help you.
12:08We've talked a lot about research, data collection, the importance of the partnership that this
12:12office provided within the federal government.
12:15But I have to ask, if anyone at home is watching and they themselves are in treatment for infertility,
12:22do these cuts mean anything for their current treatment?
12:27Probably not.
12:28But if they're looking for credible, evidence-based information, there's a few sources, certainly.
12:33CDC is always a great source.
12:35The CDC also works with the World Health Organization and other health agencies around the globe.
12:41So it's an ecosystem that's constantly working to improve the patient experience and improve
12:47the outcomes.
12:49So in terms of people who are right now doing IVF, it's probably not going to be something
12:54that they're going to feel.
12:56But the care they're getting today is because of all this work and research.
13:02For example, used to be you did IVF and you got twins.
13:06Sometimes you got triplets.
13:08One of the things that the CDC is very, very proud of is because of this data and the work
13:12that they've done, we've been able to almost eliminate multiple births from IVF because
13:19doctors and patients are approaching it very differently.
13:22So we have better health outcomes for moms and for babies.
13:27And that's a good thing.
13:28So patients today are reaping the benefits of this group of people, whether they know it or not.
13:36I think that's a really important point.
13:38Sometimes with public health, the benefits are not always obvious or immediately obvious
13:43to those who are benefiting.
13:45So in this case, again, there could be this long tail effect on what patients feel because
13:51of what happened yesterday.
13:53Now I also want to ask, what does this mean for you and your organization?
13:57How does yesterday change what you're focusing on the day to day and what your 6 to 12 month
14:03plan looks like?
14:06Well, we're an advocacy organization.
14:09We talk to members of Congress.
14:11We talk to decision makers.
14:13We talk to state lawmakers because we are advocating for insurance coverage for IVF.
14:17We want to make sure IVF is protected.
14:20And we use data provided by the federal government.
14:22I'm kind of laughing because it's kind of ridiculous to think about.
14:25But in order to influence policy, I use data from the federal government to make my arguments.
14:30So certainly over time, that's going to go out the window.
14:35I'm not sure that I'm able to use that data anymore.
14:39And that's really incredibly credible information.
14:43We always, always, always cited CDC data in our policy work.
14:47So I think from our perspective, this is a group that I personally worked with very closely.
14:54I know they were working for the best for patients and their outcomes.
15:01And I think for advocacy groups and people who want to advocate, not having the most
15:06comprehensive data from our government is going to be a big gap.
15:14Is there anything else you would like to share with our Forbes audience about the cuts to
15:19the team on assisted reproduction technology or infertility access in the U.S. right now
15:24as a whole?
15:27You know, all of these cuts are hard.
15:29I'm sure every advocacy organization can stand here and talk about groups of people and departments.
15:36I'm seeing, you know, specific groups that have been let go.
15:41This is really unprecedented.
15:44And we've got to decide, you know, where we are as a nation.
15:48Certainly what do we want our public health agency to be?
15:53And I think this is going to take a complete rethinking for all of us.
15:59Barbara Kalora, CEO of Resolve, the National Infertility Association, thank you so very
16:05much for your time and your insight today.
16:06We really appreciate it.
16:09Thanks for covering the story.