Bonus Pod: The Biden Administration Can Fix Title X

Clinics that are funded by Title X provide critical family planning care to many around the U.S. This care includes pelvic exams, STD testing and treatment, cancer screenings, birth control prescription services, and more. The Trump administration’s 2019 administrative rule, sometimes referred to as the domestic gag rule, has completely gutted the Title X program. Robin Summers, Vice President of Healthcare Strategy and Analysis and Senior Council at the National Family Planning and Reproductive Health Association (NFPRHA), talks to us about how the Title X program has been impacted by the Trump administration’s harmful rule, and how the incoming Biden-Harris administration can repair it.

For an in-depth explainer on what, exactly, the U.S. Title X program is, see our past podcast episode here!

The Trump administration rule eliminated pregnancy options counseling as a requirement, banned referral for abortion, requires providers to give pregnant patients to receive pre-natal care referrals regardless of the patient’s desires, prioritizes abstinence and fertility-awareness as effective family planning methods, among others. The rule also demands providers to give patients a misleading list of healthcare entities, but cannot denote which, if any, provide abortions. Placing these restrictions on Title X clinics undermines a patient’s trust in their providers and forces them to take on more responsibility to juggle financial, time-based, and logistical barriers to accessing reproductive health care services. 

The impact of this rule has been devastating to the Title X network. The rule has caused more than 1,000 health centers across 34 states to leave the program, equaling roughly 25% of the Title X network. Six states currently have no Title X-funded clinics whatsoever, leaving 1.5 million people without access to Title X- funded care. These restrictions disproportionately impact already marginalized communities, included people of color, low-income people, young people, LGBTQ+ people, and immigrants. These numbers only tell one story, but this ruling has caused ripple-effects, such as health centers to consider closing and patients to have to find new providers. 

The incoming Biden-Harris administration has the ability to reverse damage, repair trust, and restore critical healthcare services. Issuing an executive action that directs the rescinding of the rule would reinforce national standards for family planning. The Department of Health and Human Services should rescind the Trump administration rule in order to ensure that patients have access to the care they need from the providers they trust. Ensuring that Title X clinics received funds that were lost during the Trump administration is vital to fully relieve patients and providers of this burden. 

Links from this episode

NFPRHA on Twitter
NFPRHA on Facebook
Title X is Under Attack rePROs Fight Back podcast episode

transcript

Jennie: Welcome to RePROs Fight Back, a podcast where we explore all things reproductive health, rights and justice. I'm your host, Jennie Wetter, and I'll be helping you stay informed around issues like birth control, abortion, sex education and LGBTQ issues and much, much more-- giving you the tools you need to take action and fight back. Okay, let's dive in.

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Jennie: Welcome to this week's episode of RePROs Fight Back. I'm your host, Jennie Wetter, and my preferred pronouns are she/her.

Jennie: Y'all can you believe that in two episodes, we are going to be putting out our 100th episode? I cannot wrap my head around it. I cannot believe we have been doing this podcast for three years. I cannot believe that we have done almost a hundred episodes. This… it blows my mind. I am just so shocked that we've been doing it this long and excited that people have been listening and so grateful to all of you for listing. So, we wanted to do something fun for our 100th episode, and I have a couple ideas. So, there might be two fun episodes that are coming out around that time. But one of them we had talked about doing when we were talking about fun ideas for our election day episode, when we didn't want to release a serious episode and one that people had interest in was doing an ask me anything episode. So, I think that's what we're going to do. If you have questions you want me to answer--they can be fun, they can be light, they can be serious, they can be work-related whatever. Just shoot me an email at jennie@reprosfightback.com. And that's Jennie with an ‘ie,’ or you can reach out to us on social media with the questions you want me to answer for the ask me anything and we will do an ask me anything episode for our 100. I cannot believe it is coming up so fast. How did that happen? Oh man. Wow. So, thank you. Thank you all for listening. And I look forward to seeing your questions. I'm really excited to do this. I think it'll be fun. So just a little warning before this week's episode, I don't think it picked it up too bad, but right when I was starting to record this episode, my condo building decided to replace the skylight and the stairwell that shares a wall with my unit. So there was some background noise, but hopefully we'll be able to clean out most of it. I don't think it was too bad, but if you hear some loud noises during the interview, it is the skylight being repaired in my building. And if you hear any right now, that is my cat, who has decided she needs to be very loud while I'm recording our intro. Sorry. Um, so this week's bonus episode, I had a wonderful conversation with Robin Summers at the National Family Planning and Reproductive Health Association, or NFPRHA, talking about Title X and what we need the Biden administration to do to help save Title X. So with that, I will take you to my interview with Robin.

Jennie: Hi Robin. Thank you so much for being here today.

Robin: Thank you for having me.

Jennie: Um, do you want to go ahead and introduce yourself before we get started and include your pronouns?

Robin: Sure thing. Uh, my name is Robin Summers. I am the Vice President of Healthcare Strategy and Analysis and Senior Counsel at the National Family Planning and Reproductive Health Association. Also known as NFPRHA. Um, my pronouns are she/her/hers.

Jennie: So I am really excited to talk to you today about Title X.

Robin: Yes, one of my favorites!

Jennie: But I figured before we get into it, while we have done episodes talking about Title X, it's always good to do some level setting in case people aren't as familiar. So let's start with the very beginning, with what is Title X?

Robin: Sure thing. So Title X is also known as the nation's family planning program. It was established 50 years ago. In fact, the anniversary was actually just this past December by Congress to respond to then-President Richard Nixon's proclamation that no American woman should be denied access to family planning assistance because of her economic condition. So the U.S. Department of Health and Human Services, HHS awards, grants through a competitive process to public and private nonprofit entities to support the provision of family planning services with, uh, services being given to anyone who wants to need them, but priority being given to people with low incomes, those that are have incomes below 100% of the federal poverty level, which around right now is about 12,800-ish a year for a single person. So not a lot of money. People who have incomes below that threshold get services for free with Title X. And then there's a sliding fee scale that goes up to 250% of poverty. And then, above that, it's a full fee or insurance or Medicaid, or just whatever kind of payer source you have in recent years. Uh, the Title X grants have funded about 90 Title X projects, which is what each grantees program is called. And then those projects fund an entire network of sub-recipient organizations and individual health centers, which are either run by the grantees or run by the sub-recipients before 2019, there were about 4,000 health centers nationwide. Uh, and like I said, there are about 90 grants. Those numbers have come down significantly because of the Trump administration's Title X rule, which I know we're going to talk more about.

Jennie: Yeah. Um, and Title X has been a really important source of reproductive healthcare for so many people.

Robin: Absolutely. Uh, you know, these health centers that are funded by Title X provide access to critical family planning care, including contraception, pelvic exams, STD testing, and treatment screening for breast and cervical cancer and other preventive health services. For many people that are served by the program, it is the only care that they receive all year. So in that respect, it's really a healthcare lifeline for millions of people in communities across the country. In 2015, which is the most recent year the data is available for, 64% of U.S. counties had at least one health center that was supported by Title X and 90% of women in need of publicly funded family planning care lived in one of those counties.

Jennie: Wow.

Robin: Yeah, yeah. It's really, it is that it has been a lifeline and it is incredibly, incredibly important program. You know, family planning has been touted as one of the greatest public health achievements in the 20th century. And you know, for 50 years, this program has really served as the gold standard for quality patient centered family planning and sexual health care across the country. It is bedrock cost-effective healthcare program that helps to ensure that poor and low-income individuals have the services they need and have access to the services they need. So for many people that are looking for confidential preventive care in particular, you know, they know that they can come to a Title X funded health center and be treated with the respect and the dignity that they deserve.

Jennie: So that was all before the Trump administration came in…

Robin: Yes.

Jennie: So, what a lot of people may be familiar with is hearing about the domestic gag rule, but it is so much more than that. So what, what exactly did the Trump administration do? What was this rule they put in place that [affected] Title X?

Robin: Yeah. So the Trump rule has just gutted and distorted the Title X program. It has been the most up-ending consequential policy change in the program's history. Although the rule in many ways was designed to target abortion providers. It goes way beyond that. And it's not limited even to those entities, the Trump rule made a number of changes, as you alluded to, to the Title X program. And this, these are just a few of the many, many changes that the Trump rule made. So it eliminated pregnancy options, counseling as a requirement in the nation family planning program, which just still seems so insane to me. It banned referral for abortion. It requires providers functionally to coerce their pregnant patients to receive prenatal care referrals, regardless of what the patient wants. It redefines Title X’s requirements by prioritizing abstinence and fertility awareness as effective methods of family planning. And it removes… it does things like remove the term ‘medically approved’ from the longstanding regulatory requirement that Title X projects provide a broad range of acceptable and effective medically approved family planning methods. These changes might seem to be maybe wordsmithing, but they are actually very substantive changes because they completely dismissed the national clinical standards of care for family planning that are actually required by the Title X program and open the door to funding Title X projects that refuse to offer a broad range of FDA approved contraceptive methods. The rule required Title X providers to be physically separate from any abortion related activities, including referral for abortion, and even counseling provided by professionals other than specifically physicians or what are called advanced practice providers. So, a registered nurse is not allowed under this rule to provide abortion counseling in a Title X program. And there has to be complete physical separation. Uh, and that physical separation includes things like separate waiting rooms, separate phone numbers, email addresses, websites, separate staff, separate workstations, separate healthcare records, even separate at, uh, office entrances and exits requirements that are just completely untenable, uh, and unrealistic for the way that family planning and sexual health care is delivered, uh, and wholly untenable for providers. And so those are just some of the changes that were made under the Trump rule.

Jennie: Yeah. I just, you know, I think of this as a patient trying to access care and you don't know that your provider, doctor isn't giving you all of your options.

Robin: Yeah. Yeah. It's one been one of the huge, huge problems here, you know, along with the things that the rule prohibits you from doing and requires you to do, uh, it also demands functionally that you as a provider provide a misleading list, uh, of referral options for patients. So let's say a patient comes in, they're pregnant once, you know, they've been given their mandatory prenatal referral. They've asked about abortion. They intend to seek abortion. The provider can give them a list of healthcare entities, but cannot denote, which, if any, provide abortions, the list cannot include abortion providers that are not considered to be what's called comprehensive primary care providers. And the list doesn't even have to include abortion providers. So, you come in and you ask specifically for a list of abortion referrals and the provider gives you a list and says, “here you go”, right? The assumption is you're getting what you asked for, right? Little do you know that you may not be getting what you asked for, and now you've got to go and try to hunt all this down and figure out who's who, and what's what, and it's just, it's not the way healthcare should be delivered. And it violates so many standards of medical ethics and quality care.

Jennie: And meanwhile states are passing time-restrictive abortion bans. So, time is of the essence.

Robin: Exactly. People don't have to… I mean, you think about it, right? Even a lot of us, you know, I've been blessed to have, you know, an insurance card for a long time and a job where, you know, I have paid time off and you know, if you're low income, if you're working at a grocery store, if you're working at, you know, one of the frankly, an essential [worker] right now, uh, in an essential industry during the pandemic, you know, you're making minimum wage to go to the doctor is several hours of your day that you're not getting paid for. You don't have paid time off. Um, you've got to get scheduled if you can, you've got to have transportation to get to wherever your provider is, which oftentimes for people is buses or trains or, you know, whatever. Um, not necessarily just hopping in your car and driving down the street. Right. And you do all those things. And then you're told, okay, well now you can't actually get the information you want. So, you've got to go somewhere else. And here's this list now-- spend all your time trying to track these people down--you know, by the time you get through all of that, Oh, guess what? Now it's too late because in our state, you know, we have, uh, a ban that that is time-limited.

Jennie: Yeah. And it undermines trust in your provider, right? Like if, if your provider is not giving you what you want or telling you, things you may need to know now you're not going to trust them. And it may, you know, undermine your trust in medical professionals in general.

Robin: Absolutely. I mean, one of the, you know, as I said, the, there were a lot of in this Title X rule, one of them, well, it's actually several changes sort of altogether, but it made it so that it was undermining one of the hallmark protections of the Title X program, which has been confidentiality for all patients. But, you know, obviously, it is something that is particularly important for certain groups of people, adolescents, certainly people that are at risk of intimate partner, violence, other people who just, you know, need to make sure that they're keeping this to themselves, they need to know that their family members, their parents, their husband, their wife, their whatever, aren't going to find out, right? That they're, that they're seeking reproductive healthcare services or an STD test, or what have you. And that has long been the standard in Title X. And one of the things the rule does is it actually, like I said, undermines those confidentiality protections by pressuring Title X providers, to compel adolescent patients, to share information about who they have sex with and include their parents and their family planning care in ways that undermine that trust that is already shaky quite honestly, for an adolescent, right? They're nervous. They don't want their parents to find out. They're scared that their friends are going to find out whatever it is and now you've made it. So, you've basically turned the provider or you're, you're attempting to turn the provider into, you know, the chief inquisitor. It's not something that an adolescent is going to feel like, “Oh yeah, no, I feel safe here. I feel, I feel like I can trust where's this information going.” So, it's those kinds of things that are just so insidious in this rule, providers have been a political football and they've been taking hit after hit for so long that they have lost trust and confidence that the government supports their work. So, they are really looking to the Biden administration to act quickly, to help them get back on their feet.

Jennie: So what is this, now that the rule is in effect, what is this meant to the Title X network?

Robin: The devastating impact, uh, the Trump administration's Title X rule has had on the family planning program and the patients it serves is, is well-documented. The rule has resulted in more than a thousand health centers across 34 states leaving the program. Let me say that again, a thousand health centers across 34 states before the Trump rule, like I said, there were about 4,000 health centers a year. So roughly 25% of the entire Title X network has left the program because of this rule. Six states right now have no Title X-funded provider whatsoever. If had no Title X-funded services for, well over a year, going on a year and a half at this point that has left at least 1.5 million people without access to Title X-funded care. You know, and especially in the midst of this pandemic, it's important to understand that many of the people that seek services and Title X funded health centers are low income or people of color who experience disproportionate barriers to care due in part to systemic racism and oppression. And now they're left without access to Title X-funded care. And what that means is that these people are left without assured access to trusted confidential high-quality care, because these providers are scrambling to find alternative funding sources, to continue to provide the same level of services to those patients. So, it's created a large amount of uncertainty for providers and their patients, you know, and not everyone, not all the providers left the Title X program. You know, when the rule was implemented in the summer of 2019, it forced family planning organizations to make really an impossible decision to either stay in the program and struggle to adhere to the onerous requirements and restrictions that require them to provide incomplete care and counseling, or to leave the program and forego a critical, reliable source of funding that enabled them to provide care for the high need, low-income patients that depend on them. Uh, so it, you know, as I said in the mix of this pandemic, you know, because the Title X program disproportionally serves marginalized communities, the Trump rule in turn disproportionately harms those same communities and exacerbated the healthcare challenges that they're facing.

Jennie: Yeah. I mean, over the course of the podcast and talking about all of these issues, I mean, that's the common refrain that comes up right. Is like the same communities are continually disproportionately impacted by all of these actions.

Robin: Yes, absolutely.

Jennie: So we already kind of touched on this, but what is this meant for patients trying to access care?

Robin: You know, the network that remains has been pushed to its limits. And, and, and when I say the network that remains, I mean, both within Title X and outside of Title X, at this point, you know, providers are exhausted and therefore, you know, the health centers are continuing to be overwhelmed, not only with the pandemic, uh, but trying to figure out how to continue providing care to patients. You know, the devastation, I said 1.5 million. And, and, and that was out of what had been certified Title X, which is before 2019, so about 4 million people a year. So, you're talking about 40% functionally thereabouts of the patients, you know, that kind of devastation. It can't really be fully understood as just, just based on the numbers. You know, it doesn't speak to how the people that are the patients that are having to actually live through this, you know, what they're having to do now to try to find a different provider. It doesn't speak to, you know, for those entities that left Title X, you know, they've had to reduce the hours, they've had to cut back on services, you know, are considering having to close health centers within the next few years. You know, some states have stepped in to try to replace the funding, but, you know, a, it's not the same, it's not a long-term solution. Um, and eventually, you know, that money is going to run out even where it exists. And that's just going to have a, you know, a spiral effect on the health centers that are out there still trying to serve those patient bases. So, I think it's just led to a lot of uncertainty. You know, people at home might not know, you know, might not even know they’re going to a Title X center, right? They don't necessarily know the name or anything else, but they know where they can go get care. They know if they go down the street to ‘x’ health center that they're going to get, you know, they've been going to for 5, 10, 15 years, their friends go to, or their family members have gone to in the past and they they're going to get quality care and they're not going to be judged. And, you know, they're going to feel free to talk about what they need to talk about, ask the questions they need to ask. You know, all of that is in jeopardy. Now, all of that is uncertain. And I think for people at home, it just has, especially for people in these vulnerable communities, it just adds one more layer of uncertainty and stress and anxiety to their lives. It's completely unfair. Um, and absolutely not in the best interest of these patients or public health or anything like it.

Jennie: And especially going back to what you said earlier, like for so many of these patients, it is their only source of contact with the healthcare system.

Robin: Yes, absolutely. And especially now, you know, I mean, I, you know, I keep mentioning that, but you know, we're in the middle of a pandemic. The last thing that we need is less access to healthcare, wherever it may come from, you know, it, it's, it's just remarkable that this is what we're dealing with right now.

Jennie: Well, on a brighter note, we do have the Biden administration will be coming in very soon. What can the Biden administration do to help repair what is happening with Title X?

Robin: Yeah, they can do a lot. Uh, NFPRHA has been urging the transition team to make it right for Title X. There are thankfully some immediate steps that the Biden administration can and should take to begin to reverse the damage rebuild and stabilize the provider network and restore services. And the good news is president elect Biden has been clear that he intends to undo the damage to Title X. So, the first step is issuing some kind of executive action that directs that the rule will be rescinded, which reinforces the national clinical standards for family planning. We believe this can be done as soon as day one of the Biden administration. The second step is for HHS to actually rescind the Trump rule and reinstate the regulations that governed Title X, before 2019, you know, reversing the damage caused by the Trump rule can't happen overnight, but rescinding the rule is critical to repairing this program so that everyone has access to the care they need from the providers they trust. So that's step two, step three is to get Title X, funds to those jurisdictions and providers that lost their funding due to the Trump rule. As soon as possible, there's a variety of mechanisms that they can use. One of which is a nearly immediate funding competition to restore services to those areas. And we really need all of those steps in order to make it right. Providers that are still in the network need to be relieved of these restrictions and requirements that were in the Trump rule, providers that are not in the network need to be able to get back in. So, you know, all of these things are, are critical to, uh, to making it right.

Jennie: This is one of those things that reminds me of, since I work on both the global side and domestic, that it makes me think of the global gag rule, right? Like people think it's just this light switch that like, it's here, it's not. And so, all of a sudden people get all the money and everything's all better, or it goes away. And like, it's not that simple, like clinics may have closed. Those providers are no longer getting contracts and it takes time to rebuild what has been so thoroughly attacked.

Robin: Absolutely. I mean, a hundred percent, even once money gets back into the field, it will still take time to ramp up services again, let alone the time between when the rules rescinded and when we're able to get money back out into the field. I think, you know, your analogy is absolutely right. You can't just turn on a switch. You know, we rescind the rule and okay, great, everybody, you know, everything's fine now, no, that's not how it works at all. And so, you know, that's part of the reason that there is such urgency, um, to get this moving as quickly as possible. You know, as I said, these steps have to happen and they sort of have to happen in order. The key is too, is being able to get that money back out into the field and all of these things need to be moving so that we can start working on that.

Jennie: There is so much work that needs to be done around reproductive health. It has been so targeted by this administration that there's just so many things that need to happen. And title 10 is a really important part of that.

Robin: Yeah it very much is. And, you know, it's one of the big challenges right now, where, there, you know, are so many things that have to be fixed. Um, and how do you prioritize all of those things in a normal year or two years, let alone in the middle of it, right? It is a challenge, unlike I think, any we've ever seen. And, you know, thankfully I think this incoming administration is committed to doing the right thing and trying to undo this damage, but there are so many competing priorities that it definitely, you know, expectations have to be realistic in terms of timing, in terms of, of the things that they have to do in terms of how their hands are tied in some ways, by some of the things that this current administration has done. But yet I believe that, you know, these are people of good intention and goodwill and, you know, they're committed to working as hard as they can to get these things corrected. So, you know, we shall see, but we're very, we're very hopeful. And I think, you know, to have a good understanding of the issues and the damage that has been done and are ready to hit the ground running.

Jennie: We always like to end on focusing on something that our audience can do. So, what can the audience do to make sure that this happens?

Robin: You know, the rule is in place, the worst off the health outcomes are going to be, as I've said before, you know, state budgets, can't support programs, the way a Title X can. So, you know, NFPRHA is committed to making it right for Title X. You've heard me say that phrase a few times and that's actually a hashtag-- #MakeItRight—it is what we're as part of the campaign that we are engaging in. Uh, and at the end of the day, this is about patients having access to critical health care. You know, as I said, contraception, pelvic exams, STD testing, and treatment, breast, and cervical cancer, et cetera. So, the audience can join us in our work to make it right for Title X, you can lend your support by following us on Twitter. We're @NFPRHA. You can follow our hashtag, #MakeItRight and follow what the Biden administration is doing once they are in office and voice support. The folks that have supported what the Trump administration has done are not going to be quiet as the Biden administration attempts to, to fix these things. And your audience can help their communities, their friends, their families understand the importance of what the Biden administration is trying to do by voicing their support for what the Biden administration is trying to do.

Jennie: Oh, Robin, it was delightful talking to you today about Title X. Thank you so much for being here.

Robin: Thank you for having me. I appreciate it.

Jennie: Thanks for listening everyone. And we'll see you on our next episode of RePROS Fight Back. For more information, including show notes from this episode and previous episodes, please visit our website at reprosfightback.com. You can also find us on Facebook and Twitter at RePROS Fight Back, or on Instagram at reprosfb. If you like our show, please help others find it by sharing it with your friends and subscribing, rating and reviewing us on iTunes. Thanks for listening.

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