Title X is Under Attack

 

Title X is the national family planning and reproductive health program for low income women and men enacted by Congress and signed into law by President Richard Nixon in 1970. The bipartisan program was intended to combat the war on poverty; low income women were having more children than higher income women due to poor access to contraception and its high costs. Title X was created to equalize access to modern contraceptive care, and the program still fulfils that promise today. Clare Coleman, President of the National Family Planning and Reproductive Health Association (NFPRHA), talks to us about NFPRHA, Title X, and what we can do to save Title X from the current administration’s unprecedented attacks.

Access to contraception is not a given in the United States. Many methods of contraception are prohibitively expensive, even with insurance for a lot of people. When contraception gets expensive, patients may turn to skipping methods or stretching methods to make it last. For example, a patient might sacrifice paying $50 for their birth control pill this month and opt only for a condom because that’s all they can afford. That’s where Title X and NFPRHA comes in.

NFPRHA is an organization that was founded by volunteers in 1971. They work to educate the government and policy makers on Capitol Hill about how Title X should work. NFPRHA has 900 members around the country that subsidize care for poor and low income people. These member locations are multiple, including but not limited to feminist health centers, traditional family planning centers, university clinics, primary care centers, and hospital centers. Half of these members are government based, and half are non-profit based. 

Title X centers see about 4 million patients annually, but there are an estimated 19 million patients in need of reproductive healthcare. 

NFPRHA and Title X centers provide care to anyone who seeks it, but the primary patient is an adult woman between the ages of 20-24 or 24-29. These patients are usually working or going to school and often already have a child. They need affordable counseling, support and services in partnership with their chosen family planning methods. 

Title X has been under attack for years. In FY2010, Title X faced both political targeting by a Republican majority that opposed access to reproductive health care, and budget sequestration leading to cuts. The Trump Pence administration has proposed the first comprehensive changes to Title X rules in three decades. These new rules, known as the “domestic gag rule,” are intended to disrupt ethical communication between patient and provider by gagging counseling, information, and for abortion services. In fact, this rule only allows providers to refer for prenatal care or social services, and completely takes abortion off the table. If a patient definitively states to a doctor that they want an abortion, the patient is handed a list with clinics that may or may not include abortion providers. 

If you aren’t low income and don’t need to see a Title X provider, why should you care? Well, you don’t need subsidy and you don’t need to be low income to be seen in a Title X-funded setting! Anyone who walks in the door at these settings gets the same high quality care- Title X clinics see people with or without insurance. Inform, educate, and care for. That’s the mission of Title X. 

Transcript

Jennie: Welcome to rePROs Fight Back a podcast on all things repro. I'm your host Jennie Wetter. In each episode, I'll be taking you to the front lines of the escalating fight over our sexual and reproductive health and rights at home and abroad. Each episode, I will be speaking with leaders who are fighting to protect our reproductive health and rights to ensure that no one's reproductive health depends on where they live. It's time for repros to fight back.

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Jennie: Hi everyone, and welcome to this week's episode of rePROs Fight Back. Before I get started, just one quick housekeeping thing. You're not too late. You still have a chance to win free rePROs Fight Back swag. All you need to do is reach out to us on Facebook and Twitter by August 31st and let us know what topic we have already covered that you loved or a topic that you would love to see us cover. That way we can make sure that we are producing content you all enjoy. So make sure to reach out to us at rePROs Fight Back on Facebook and Twitter and let us know what topic you would love to see us cover or something we've already done that you particularly enjoyed. Thanks and now enjoy the interview.

Jennie: Okay, welcome to this week's episode of rePROs Fight Back. Today. I'm excited to talk about what is happening with Title X and I couldn't think of a better person to talk to than Clare Coleman, the President of the National Family Planning and Reproductive Health Association, which we'll probably referred to as NFPRHA throughout the rest of the episode. It's a tiny bit shorter. Uh, hi Clare. Thank you so much for being here.

Clare: You're welcome. I'm delighted to see you and to have a chance to talk about Title X.

Jennie: All right, so before we talk about what's happening with Title X we should probably start with the very basics is what is Title X?

Clare: Title X is the National Family Planning Program. It was enacted by Congress and signed into law by Richard Nixon right after Christmas in 1970 and it's a program that came together with bipartisan support and very broad support, um, as part of the war on poverty. There was thinking at that time that for Americans to be competitive, they needed to have both educational and economic opportunities. And there was concern that low income women were having more children than higher income women. And it wasn't because they wanted larger families, it was because contraception had just begun in the last decade and the decade before in 1970 to be introduced in the United States. And it was expensive. And so there had been a fair amount of evidence that contraception was becoming available, that it was effective, and that low income people were having trouble accessing it. So the Title X Family planning program was created to equalize access to modern contraceptive care. And the program today fulfills that promise.

Jennie: That's great because you really, it shouldn't depend on if you can afford it or not, if you, to be able to plan your family.

Clare: Correct. And as you know, as contraception has evolved, there's lots of different methods. The Food and drug Administration has 18 different method categories of method and many methods inside of those categories. And but some of those methods are for many people prohibitively expensive. Even with insurance people sometimes struggle to meet the cost of an effective contraceptive. So if you are low income, if you're a person that's making 12,000, 15,000, 18,000 dollars a year, $22,000 a year, which the majority of Title X patients are coming in with incomes under $25,000 a year, the notion that you would get the most effective method, which is often the most expensive method is just out of reach. It's not realistic. And so Title X tries to even that playing field by making a broad range of high quality methods available, of the patient's choice, on the same day whenever possible. Just like someone with insurance might have access to.

Jennie: Yeah, I mean I remember when I first started working, I was making $35,000 a year and before the ACA and the birth control benefit went into effect having a $65 a month birth control pill and at some points definitely had to decide, okay, can I really afford this?

Clare: Is this a month I skip or stretch? We've heard stories about patients, they'll take pills every other day, right? They'll stretch their supply. Um, they'll take the risk, right? They'll switch to a less effective method like condoms. Um, that's not a choice anybody should have to make. And, uh, I'm older than you, clearly cause I started out making $20,000 a year and working, but working with insurance that didn't cover contraception. So I think many of us in our lived experience, we may not live it right now. We may be living it now, but many, many people have had the experience of really trying to figure out how do they fit the cost of contraception into their life.

Jennie: Okay. Clare. So can you tell me why you care and why you got involved?

Clare: So I will tell you that I came up in, um, I wanted to work on Capitol Hill. It was, you know, I majored in government in college and I had been very active as a kid in campaigns as was my family. And uh, all I wanted to do was work on the hill. And I did that and it was fantastic. And at a certain point you grow up and I started to look around the community, the world and thought what can I do to make a difference? And, and what I found was Planned Parenthood. Um, back in the day when Planned Parenthood was not as big as it is today and certainly not as prominent in the policy and political debates. And I went in and improbably got a job and I think I was, I think I was academically or intellectually committed to Planned Parenthood. And what happened when I went to work there, was I just fell in love because the people are so fantastic and this is true of the NFPRHA people. This hasn't changed for me. I'm still sort of in love. They are hardworking, they are ethical, they are passionate, they are so smart. They know a million ways to stretch a dollar, solve a problem. Keep engaged, keep themselves motivated. I just completely fell in love. I was really lucky in that I could travel all around the country. So I worked, um, in the 90s on the abortion debates of that decade. It was a really tough emotional time in the field, tough for providers. Um, Dr. Barnett Slepian was killed, um, shot through his kitchen window while I worked for Planned Parenthood as their lobbyist on abortion care. Um, I did not know Dr Slepian, I had never had the opportunity to meet him, but I was in New Yorker and I knew of his work. And I think the intensity of supporting people who put themselves at risk and their families at risk, um, and continued to do extraordinary care was just a life changing experience for me. I wasn't expecting that, I expected, you know, Planned Parenthood was a good cause and it was important and I did not expect to fall in love. And I did.

Clare: Um, and about a decade later I became a Planned Parenthood CEO, myself working in one of our health systems in New York. And again, fell sort of even deeper in love. And not just for the, with the people who worked there, but with the people who support us in the community. Um, you know, you worry as this issue has become more partisan and our country has become more polarized, that people would be unkind, that you would be unsafe as many people are around the country who do this work and I just felt this extraordinary sense of commitment and warmth. I remember people saying to me, I would say, you know, this is who I am and I'm the CEO of Planned Parenthood in this area. And they would say, Oh, Planned Parenthood, that's my favorite charity. And I think, again, I come from Washington where it felt very divisive and it felt very like everybody at the ramparts and then you got out there in the world and people were like, I know Planned Parenthood, they're on this corner. They've been in this community. I went there. I mean, again, this is where I get the, I found out that I was pregnant at Planned Parenthood. Like, I can't tell you how many women told me that and then introduced me to their 17 year old or 21 year old or whatever year old who was going and volunteering. So I didn't just fall in love with the people who worked in the health centers and did our education programs, I fell in love with this notion of like as a community we make a commitment. And I have followed that commitment now 22 years.

Clare: Um, I'm just starting my 10th year at NFPRHA. It's a different community, a bigger community. Um, we have lots of Planned Parenthood involvement, but tons of non Planned Parenthood providers, again, governments and non governments. I've learned so much. I love what I get to do and who I get to support. And I just really strongly that the work that they do is critically important and it's really hard. And what we get to do at NFPRHA is have their back and be their champion and try to think ahead with them and for them. And that feels like a huge privilege. So that's why I care. And I just want to say to people who are listening to that, if that sounds exciting to you, there's lots of room in this field to come in and do a part and there are lots of roles to take. So if you are passionate and committed and want to do the work here, welcome. Uh, there is always room for more passionate, smart, committed people who want to make a difference. We need your help.

Jennie: Um, why don't you tell us just a little bit about what NFPRHA is.

Clare: So the National Family Planning and Reproductive Health Association is a very long name for an incredibly influential and galvanizing organization. We were founded by volunteers in 1971. So immediately after Title X was enacted, a group of volunteers from around the country, some of whom are still active in our field and influential in our field, came together and said, we're so excited about the promise of what Title X might mean for access. Many of them were already involved in communities doing health care or feminist outreach and they said, we really want to influence how this money is organized and delivered around the country. So they came together as a group of volunteers, we had no staff, we had no office, and they worked to educate the government and policy makers on the hill about how Title X should work. It's hard to stand up a brand new program and Title X from the very beginning, funded a very diverse provider network, but also was administered by very different entities. So about half of our network is governmental. About half of NFPRHA's members work in governments of some kind, state governments, city government, municipal government. The other half of our members work in private, not for profits. That's unusual, but it's all tied to the fact that Title X is distributed on a competitive basis. So governments or private not-for-profits choose to apply and make a case for why in their applications, they're the best suited to deliver care around the country. So that's NFPRHA never came together. Today we have about 900 members in all 50 states, DC and some of the territories. The only common denominator amongst our members is that commitment to subsidize care for poor and low income people. We have members who are traditional specialty family planning centers. We have feminist health centers, we have college and university health clinics, but we increasingly have primary care centers, hospital-based centers. Really interesting changes have been happening over time. And again, about half of our members actually sit in a government and about half our members sit in private, not for profits.

Jennie: I think that's a really important thing to talk about because I think when people talk about Title X or what we'll get to cutting funding for Title X and often their target is Planned Parenthood, but there's so many other providers that um, would be affected beyond Planned Parenthood.

Clare: Sure. So when you look at the federal data, Planned Parenthood makes up less than 15% of the provider network. Most of the providers are in government settings. But, and here's a really important distinction, Planned Parenthood makes up 15% of the provider network. They're seeing upwards of 40% of the patients. That's really an issue of service availability. And this is, this is how I like to talk about this. So if you work in a county health department, um, you are tasked with like all the public health imperatives in that region. So on Monday the health department, which provides health services, direct services, patient care, may be working on infectious disease, you may be doing TB screening. On Tuesday, you might have your sexually transmitted disease clinic where you're again ensuring that people have access to screening and treatment for STIs, and STIs in this country are at epidemic levels. Wednesday might be the family planning day. And on Thursday your clinical staff, your nurse practitioner might be the school nurse at the local high school. That happens quite a bit in a governmental setting. There's relatively few staff and they're spread really thin. Whereas if you go to a specialty setting, like Maine family planning, which is a Title X provider and runs direct health services all across the state of Maine, which is a very large, um, very diverse state in terms of typography, um, you are doing family planning every single day. So those specialty providers are going to by nature, see a disproportionate share of patients. And when you talk about the Planned Parenthood, some Planned Parenthoods now are open seven days a week. It's not happening everywhere. But in most places they're open five, six days a week. That kind of service availability means many more patients can be seen in those settings than can be seen in a governmental setting.

Jennie: So we, you lived into this a little bit when you first told us what Title X was, but I think it's really important to draw out because I think if you were to tell somebody this now, they would kind of think you're crazy. That Title X was founded on a bipartisan basis and was a bipartisan program and you really don't see that support right now.

Clare: Now things have changed so, so much, not just since the 70s, but even since the mid nineties. Um, but back in the s in the late sixties and early seventies, there was a real consensus in this country about the importance of people having equal access to contraception. And again, people took it from different frames, right? Some folks were concerned about maternal mortality, women's health, other people were concerned about competitiveness and educational attainment. There was a real concern that the US might fall behind. And you know, many people have talked about when you take the talents and the aspirations of women and connect it to an inability to plan space and decide whether or not to be parents, you are effectively disabling half of your population. So I think a range of, of elected officials and policy makers came at it from their own personal perspectives. There were even folks who said they're concerned about the environment, the use of world resources. That was very much a theme and a concern in the 60s and early seventies but it culminated in this sense of real consensus in this country. And you know, Title X's primary sponsor in the House of Representatives was future President George Herbert Walker Bush, who made a series of very compelling statements about the importance of equal access to contraception. Richard Nixon, similarly. And at that time there was so much consensus that Richard Nixon said, I think we can erase this access issue. We can even the gap in five years. That was the intention in 1972 to even the gap in five years. And now we're almost 50 years later and poverty has grown, contraception has become more expensive and we're still grappling with meeting anywhere near the needs. So today with the resources that Title X gets from Congress, which Congress allocates every year, it's their job to allocate the money for the program we serve about one fifth of the demonstrated need. And how we know about demonstrated need is through research. We look at mostly women, right of reproductive health age who need some sort of public subsidy, some support in order to access their contraceptive and sexual health care. So with the money we have today, we see about 4 million patients. There's upwards of 19 million patients in need. So if Congress would be more generous, if they would recognize and respond to the need, we could see substantially more patients in our current network, but also be able to grow our network, bring in more health centers, see more patients all across the country.

Jennie: Yeah. I mean you definitely have places where there's, it's hard to find a place to get service. I know I grew up in rural Wisconsin and it was hard to find somewhere to go, especially as a teenager, to think of somewhere where I could go to friendly services. And I, it also connects to something else, which is a bit of my passion side project, which is access to quality, sex education. I mean, I went to a Catholic school, so the thought of go going to a family planning provider was very daunting because I was definitely of the Mean Girls variety of sex ed. You know, you have sex, you're gonna get this horrible disease and die. So, um, yeah. You see kind of multiple kinds of kinds of gaps.

Clare: Yeah, no question. And what you said just made me think of the fact that I am actually still waiting for my sex talk and I'll be 50 in a couple of years. Um, lots and lots of people don't get adequate sex education. They don't get values, education and real engagement from their parents and caregivers. They don't get the opportunity until relatively recently to be educated in school and they don't get appropriate information that is culturally responsive and age appropriate when they go to see a provider. Um, one of the really important things about Title X access is that unlike many other, um, health services or health programs, the program has done a very good job at being geographically distributed. We're available, a Title X provider is available in most counties in the United States. The problem is there's no label on the door. Right? And you and I are talking, um, you know quite easily about Title X, but nobody knows what that means.

Jennie: Absolutely no.

Clare: And there's no sort of brand or sticker, right. You might see a Adogio Health iff you live in western Pennsylvania, you might see Womenkind if you're walking down the street in Key West Florida, you might see Seattle King County Public Health if you're in Seattle. So nowhere is there one common color or symbol or even just the phrase Title X, which is just a part of the Public Health Service Act. It's a reference to the part of the law where Title X was created. So it's a very nichey Washington-y kind of term. Um, there's no way for people to know and most patients know through word of mouth. Especially younger patients. Um, our adolescent patients come to us primarily for health education. And that may either happen inside the health center or out in the community. Title 10 providers have a lot of really good relationships, whether they're with community organizations or youth development groups with governments um, even with faith based organizations, girls empowerment, boys empowerment, all sorts of groups where we do work inside the community. I actually used to run a Title X program in New York and our providers inside the health center would see a lot of patients for education. But most of our education work happened outside our walls in the community, in interaction afterschool. Most of the patients who come through the door are adults, and those patients are primarily seeking health services. So I think there's, um, there's sometimes a disconnect in the policy discussion about who the primary Title X patient is, right? It's an adult woman. And our primary patients are like the biggest cohort we have are women either between the age of 20 and 24 or 24 and 29. Those women are almost entirely working. Some of them are also going to school and many of them have at least one child already. So these are working adults who need our help and support to get information counseling and methods, sometimes screening for both cancer and STDs to go along with that package of support around their family planning choices so that they can get back out and take care of what they need to take care of. Um, but you're so right that being able to understand in any given community where you can find confidential services, where you can find expertise is the key to Title X. And I think our reputation, the program's reputation is built by the people who work there. And it's shared by people who have a good experience. And I think one of the great stories of Title X is many, many people have a great experience.

Jennie: Well and its great because you can get the method that works for you, not just the one you can afford.

Clare: Correct. And the method that works for you is going to change very likely over time. So it's great to be in a place where lots of different methods are on offer, the provider that you're seeing is expert at them and is there to listen and respond. So one of the things I think is really important about today's battles around Title X is that notion of patient connectedness and patient-centeredness. The entire Title X program now is built around this notion that the client tells you why he or she is there and it's their needs and their interests that should lead. It's really a shift away from this notion of we know what you need and really allows patients to come in and say, listen, I don't need a whole exam today. I don't even, I don't want to take my pants off. I am just here for a method check or I am just here because I am concerned about side effects or I am just here because I'm contemplating a new partner or I have a new partner and I want to do some screening today. This is a program that has moved to be very, very effective and really focused on client-centered interaction. It's one of the things we're deeply concerned about, uh, with the Trump administration's new approach to Title X because it really is the heart of the program. That notion that you come in and say what you need and we meet you in exactly that place.

Jennie: Well, unfortunately that brings us to a great turn to all the attacks Title 10 is under, um, and unfortunately it's under multiple. So let's start with maybe the simpler one to explain, which is the attacks on funding.

Clare: Yeah. And these attacks go all the way back, the past eight years.

Jennie: These are not new.

Clare: Yeah. Um, and it really started happening in the early Obama Administration, uh, fiscal year 2010. So really interesting time. So I had just come to NFPRHA as a, as I said, from being in the field, running a Title X funded health center. And those were the very early days of the recession. It was really scary. And I, I don't know, I think folks who are listening to this podcast they live anywhere in the country, so they may have a really strong recollection and experience of this. I'll just speak from where I sit. I've never seen people tumble into poverty faster than they did in 07, 08, and 09. They lost their jobs or they lost their hours if they had health insurance when they lost their hours, they lost their health insurance and everyone sort of tumbled down the income scale and it changed their housing opportunities, it changed their educational opportunities for themselves and for their kids. It was the single scariest thing I've ever seen um, working in public health and reproductive health all these years. And I think Washington just didn't get it in the years before 2010, we had increases in the Title X program and we saw big increases in the number of patients being seen. We posted two years of huge increases, which showed that the systems had the capacity to see more people if they would just give us the money to see the people. And then in 2010, we had sort of a cascading series of tragedy, right? We had political, um, targeting by a Republican majority that opposed access to family planning care and opposed a number of our providers. And then we had some of the budget negotiations, which resulted in something called sequestration, which is essentially mandatory cuts that fall in spending in federal spending when the Congress can't agree on an approach. When sequestration went into place, it was seen as, you know, the absolute last resort. And there was this sense that Congress would certainly do its job, work together and produce budget agreements. They failed to do it. And so we not only had politically targeted cuts to the Title X program, we then got hit by a wave of sequestration. Those two things combined means that a million, more than a million patients who had been seen in a Title X funded setting disappeared from the system. They fell out of care because when we don't have money to subsidize care, we just see fewer patients and that has persisted. So in the last five years we have been level funded, which in the real world, right, everything gets more expensive every year, right? Electricity gets more expensive, then salaries get more expensive and supplies get more expensive. So level funding actually is a cut. But what we have seen is systems have figured out, they're always smart with a dollar, systems have figured out how to be as smart as possible with that Title X money. So now we've, we're roughly flat. We're seeing roughly 4 million patients a year. We're anticipating brand new federal data in the next week or so, that data will be for 2017, Calendar 2017 so we'll be quite a bit behind, but it will give us a sense of where the system stand now in terms of patients being seen seen. We anticipate roughly 4 million patients. But again, if you look at who needs help, it's a much more substantially higher number than that. And we really wish Congress would just set aside this nonsense and give us the money we need to see people who need our care.

Jennie: And unfortunately the budget is kind of the least of the problems at the moment. Next the Trump/Pence administration has proposed a domestic gag rule on Title X, can you tell us a little bit about what the proposed domestic gag rule is?

Clare: So the administration has proposed the first comprehensive change to Title X rules in about three decades. It is certainly intended to disrupt ethical communication between a clinician and a patient. So that's how people very quickly get to this notion of a domestic gag rule. Let me talk about what that is because it goes all the way back to the Reagan administration. So in the Reagan/Bush years, there was an effort, um, by the, the, those administrations and the Congress to impose, um, limits on what clinicians, so doctors, nurse practitioners, certified nurse Midwives, physician assistants, could say to patients about abortion. Today in the Title X program, um, again, patient led. If a patient comes in pregnant or has a positive pregnancy test at her visit, the patient leads the conversation. And I'm going to be honest, some patients are thrilled. I can't tell you how many people have walked up to me in the last 25 years and said, oh, I found out I was pregnant at Planned Parenthood. There was a lot of excitement and joy sometimes around a pregnancy test. And there's also some times deep ambivalence, confusion, surprise. And sometimes it is dismay. It is horror. It is fear. All of those things are part of the experience of a positive pregnancy test. Today in Title X, the patient's reaction and request tells us what to do next. So if a patient says I'm delighted, oh my gosh. We don't say, oh, it'd be very important for you to understand about abortion options, right? The patient tells us what to do. So if a patient says, wow, I wasn't expecting that, that's not, that wasn't in my plan. I need, I need to understand what my options are. Under the law we call that options counseling and we are required to do what's referred to as non-directive counseling and referral. So that means you give the patient medically accurate facts, you offer her that information, you engage in conversation and if she requests it, you give a referral. So if she says, oh, I already have a couple of kids, I'm not sure, you know, I've always thought maybe you know, foster care, you, you could make a referral to the appropriate social services agency so that patient could follow on and figure out what would be right for her. If she's delighted and you don't do prenatal care at your center, you can refer her to a reputable and high quality prenatal provider. If the patient says, I'm sure, but I do not want to pursue this pregnancy, I'm not ready to be a parent, you can refer counsel and refer for abortion services. This proposal from the administration says that last item is off the table off the table. So instead of engaging with the patient and listening to what that patient has to say, you take an option immediately away and begin to focus on just one or the other. So just prenatal care or just social services and it actually goes further. It says that if the patient is pregnant, you have to refer for those services. Even if the patient says, listen, I need some time with this. I need to go home and talk to my partner, whatever it is they say. This rule proposes that our centers begin to basically take the lead. Um, it goes so far as to say that we should be making appointments for patients.

Jennie: Oh, I guess I missed that part. I don't think I saw that.

Clare: It goes so far as to say we should be making appointments for patients. And the rule says specifically if a patient definitively states to a doctor and uses both of those words definitively states unto a doctor that they absolutely will seek an abortion, then you may hand that patient a list. On that list must be a series of providers which may or may not provide abortion care. Even though the patient has just said, I am going to have an abortion, the list of providers may or may not have abortion providers on it. The providers on it must be comprehensive health providers that do prenatal care. So even in a case, a patient has said clearly, explicitly, directly, this is what I want, this is what I is best for me. The, under this rule, our systems would be required to try to direct her. Um, and I think one of the things that is so troubling about this, and there's many other things in this proposal that are immensely troubling, but the core of Title X, what makes it the gold standard in care for reproductive health, is that notion that the client's values lead the interaction and the client's decisions or preferences are what we respond to. And it completely inverts that relationship. And listen, sexual health, family planning, these are really sensitive subjects. They are the deepest part of many people, right? Sex and intimacy are right where we live and many people believe they were put on this earth right to partner and have a family. So you're really in deep with stuff that's very, very sensitive. If you're perceived to lie to or mislead a patient, you've broken that trust forever. And, and you haven't just broken it between you and that patient. You've broken in between that patient and that place, right? You wouldn't come back to a health center, regardless of who the provider is, if you felt that you had asked for help, you had raised questions and they had misled you. And this rule essentially says to our providers all around the country, you're going to play by the government standard, you're going to, the government's going to tell you what the right choices are gonna be. And because there's federal funds you've got to adhere. That is antithetical to medical ethics. It is not appropriate for patients. It's not responsive to what people are telling us all around the country that they need, which is some place safe to have deeply personal, sometimes quite sensitive, some people say embarrassing conversations about the deepest part of their bodies and of their humanity. So that's one of the reasons we find just this part that is around counseling information and referral for abortion to be so deeply, deeply troubling.

Jennie: Well, you know, it doesn't just break your trust with me cause I'm going to be upset and I'm going to tell people that, you know, I went there and they wouldn't listened to me. They wouldn't do what I was asking. Like I wouldn't go there if I were you.

Clare: And the interesting thing is you might, you wouldn't know that. Right?

Jennie: That's the scary part.

Clare: If I'm a, if I'm your nurse practitioner and you say, I've made my decision, this is what I'd like to do and I, you know, reach behind me and I give you a physical list. Again, we're not required on those physical lists under this rule to list an abortion provider. Even though you had said that's your choice. So not only have I misled you, I've cost you time. You're going to find out the hard way that the, that some of those entities don't provide abortion care.

Jennie: Maybe shamed.

Clare: Correct. And as you, as everybody knows, it is not that easy to make a doctor's appointment in this world. Sometimes you have to wait, right? You've also got your own life, your own schedule, your own commitments. If you have a job, right, you may not have endless availability. If you're in school, et cetera. If you have both going on and you're raising a family, there are so many ways that like we're not sitting around and the medical system believe me, is not waiting with open arms for you to show up at your convenience. So it is not only deeply disrespectful because it just, it totally ignores what the patient is saying, but it, it puts you into what you know, what we know is a wild goose chase deliberately, which costs patients time. And if we really cared about the health of patients, if we really cared about making sure that women are safe in all of their choices, time is a factor, right? Any care that you seek, you want to seek it sooner rather than later.

Jennie: Yeah, absolutely. I mean when you start thinking about adding the abortion restrictions on, on states, time really does matter at that time.

Clare: And if you're in a state where there are multiple layers of restrictions, there's a waiting period plus informed consent, all of those things start to add up. So it is so bad for individuals, for their autonomy, for their own health, it's going to have a very devastating impact on public health as well. So if it just said, if the rule just said that NFPRHA would strongly oppose it and fight to the last hour of the last day to make sure this is not what Title X becomes. That's not all this rule says, right? This rule goes quite a bit further in lots of different very technical areas to begin to invert the values of Title X. It and it elevates the importance of natural family planning or fertility awareness as equal to the access to contraception. It seems to imply that you wouldn't have to offer medically approved or FDA approved forms of contraception and still get this money. It would allow people to impose religious or moral restrictions on what is offered in a Title X. Project. There are many, many aspects to this rule that are incredibly, incredibly disruptive and damaging to health.

Jennie: And being able to find the method that works for you means you need to be able to have access to a full range of methods because you know maybe the birth control pill isn't right for you and this provider has decided that long acting reversible ones that are not something they want to offer that complicates things.

Clare: Correct. And again, go all the way back, Title X was meant to equalize access to modern contraception. It does a whole bunch of other stuff, right? It also helps people who are struggling to be pregnant work through some basic infertility screening. We don't offer infertility services in a Title X context, but if someone comes in and says, listen, we've been trying for a while and it's not happening, our clinicians are equipped to help people conceive. Our clinicians are expert at having engaged conversation, education and counseling around a full range of sexual health issues. Our clinicians and our educators are out in the community talking about why adolescent access is so important or why LGBTQ people can and need to be seen on a confidential and respectful basis. Title X is not just about contraception, but the primary thing that people come to us for is information, education and access to methods. That's what people know the program for. Again, nobody knows what this program is called, but everybody knows it has an understanding of what it means to get those kinds of services and a respectful way.

Jennie: Are there any other parts of the rule that you want to dig into or it gets a little wonky...

Clare: There are many, many things that are of deep concern, and we along with hundreds of thousands of people around the country have let that the administration know really clearly what we think those concerns are. I think I just want to mention one that again, people may, if you're following this closely and if you're a podcast listener, um, you may follow this very closely. I think there's a lot of concern and a little misunderstanding about what the administration proposals around separation of program might look like. So today in the Title X program, you can be providing abortion care outside of your Title X funds outside of your Title Xprogram. And there are lots of ways that the administer the government has over time told those of us on the provider's side. How do you document that? How do you show that? How do you prove compliance and people prove compliance? Um, it is relatively straightforward to keep your abortion activity that is not in Title X separate from your Title X activity. And I, again, I used to work in a provider setting. I did this. Um, it is relatively straight forward and lots of people around the country do it. This rule asserts again the government's interest in requiring physical separation. So let's just say a couple of things about what that means. The proposal seems to suggest that you would need separate entrances, separate waiting rooms, separate staff, separate medical records, separate supplies, separate physical premises.

Jennie: So expensive.

Clare: So expensive and so ridiculous, right? Um, it's a health setting. Our health centers now are built out to have modern equipment to have ultrasound on site. The Bababababa... To make us build a totally separate setting to keep our, our Title X activity physically separate from any abortion related activity is just ridiculous. But the way the proposed rule is written, we believe it doesn't just affect entities that provide abortion care because it also seeks to reach any activity that would support, promote, make positive statements about abortion. Now let's go back to something I said quite a bit ago. Under current rules, we're required by law to do counseling and referral for abortion upon patient request. That's a rule of the program. So that's potentially being seen as supporting, promoting or making favorable statements, right? If you're giving non-directive counseling and referral about abortion, you are doing abortion related activity. The rule suggests that any abortion related activity is not allowed in the same building where your Title X activity happens. So I think some folks look at the press coverage or looked at some activist alerts and said, well this is going to affect folks that provide abortion. There are lots of folks who provide abortion care that work in Title X, there are lots of folks who work in Title X that don't provide abortion care. We contend that it affects everyone and so there's, I mean it is so expensive. It is so prohibitive. It is so outrageous to think that all around the country Title X programs would have the resources to open new sites. This is probably a good time to mention that we're not allowed to spend any money on construction or renovation with Title X funds. So you can't use Title X money to buy a building or renovate a building or make the, you know, if this rule went into effect and you had to have separate waiting rooms and separate entrances. Title X doesn't allow you to use money to make changes to your physical plant that's not allowed. You can buy supplies and you can um, buy contraception. Certainly you can support salaries. You're not allowed to make physical plant changes. So they would impose this restriction potentially on our systems. We contend that it will affect everyone, and then by law prohibit us from using the federal money to make the changes that they've required. So it's very clearly intended to drive out traditional Titel X providers from the program, make it almost impossible for folks to stay in.

Jennie: Okay. So right now this is a proposed rule and the comment period just ended. Do we have any idea on timeline?

Clare: Um, we, we think that sooner rather than later, um, the administration seems relatively intent on imposing these restrictions on the program. We want to, we look at it in combination with another action they've taken on Title X, which is, last year they took the entire Title X network and there are 85 grants currently again, mixed between governments and non governments and shortened all the project period. So pretty wonky. But when people get Title X grants, they get it for a period of time, usually three years. Last year they took the entire system and said, no matter where you are, whether you're in year one of your program or year two or year three, everybody's grants and next year. That was unprecedented. And then they forced them into competition under a new set of rules. NFPRHA is litigating against the government on these rules right now. Um, these conditions I should call them, they introduced a new series of conditions in the grant competition. So if you want to win the money, you have to do Bubba, Bubba, Bubba. Uh, we think they broke the law in doing that. And we, we are, uh, we have sued them and our litigation is ongoing. That I think is the first signal, uh, to the network that they were going to try to force change. This rule is the next. And it's more than a signal, right? It's like a punch in the face. We are now awaiting awards being made in the coming days, coming weeks. We don't know how, how much money people are getting or how long they're going to be given to do their work. So I think they are, I would, I would anticipate, expect that that rule will be finalized in the next six months and I would not be surprised if it was finalized in the next three months.

Jennie: Okay. Um, so let's say I'm, I don't need Title X funding funded contraception. Why should I care?

Clare: Hmm. Uh, well, two things. First of all, you don't need to need subsidy. You don't need to be low income vulnerable or need confidentiality to be seen in a Title X funded setting. And in fact, one thing you could do with your insurance is bring it to a Title X funded setting. Um, anybody who walks in the door, a Title X funded settings is going to get the same high quality attention and care. We see people without regard to insurance status. And so people think of that as, okay, we'll see people without insurance. But it also means we see people with insurance. And one really practical way people can help us right now is to bring your insurance to a Title X setting. Um, we will be seeing capably and well, you will have access to a full range of methods. You'll see an expert and your insurance payment will help keep our centers open. So having insurance doesn't mean you're not welcome. And I would say having insurance means you, I would say you're going to get the best possible care at our settings cause we were good at it. There's a reason why we're good at it, we do it every day.

Clare: The second reason to care is that throughout our lives, we're gonna experience a lot of different challenges. And again, I think about some people come through a Title X funded setting at some part of their life. It's situational. They're in school, they're struggling with a partner. They may have a parent who isn't hearing them or can't hear them. Their engagement with our system is situational. Other people will stay in our systems. That's where they're going to get their care. You know, for four in 10 people we're their only source of care and for six and 10 people we're their usual source of care. So that's not so weird, right? Because for a lot of younger people, people in their 20s reproductive health care is a primary care set that they need, right? They don't necessarily need a lot of other health services, but that's a set of health services they reliably need. But think about that for 40% of the people who walk through our door every year, we're the only health provider that they see. And so you may be one of those people at some point in your life and having a system that is there and open and willing to take you whether or not you have the money, uh, whether or not you need confidentiality, I think is something we should all care about.

Clare: And then finally there's a public health interest. Right? Family planning has been an extraordinary, extraordinary public health success in this country. The CDC has recognized to this such it has changed the opportunities, both educational and economic for several generations of women, and I believe of men because when men and women are partnered, the women's opportunity to plan space and decide whether or not to have a family has a direct impact on the partnerships that they form. If they form partnerships with men or they form partnerships with women. So I think the importance of having a really robust system of providers around the country who are great at what they do confidential to the health and engage with what patients need is something that frankly, a lot of us would love to see in our own health providers. No matter what your income is, you deserve that kind of care. And that's the commitment of these systems and the people who work in them.

Jennie: Absolutely. Okay. I always love to end my interviews with an action. So what can people do? Right now, there's so much going on. What actions can people take to be helpful?

Clare: So I have two thoughts. One is obviously we want you to be talking to policy makers of all kinds. We want you to be talking to members of Congress. We want you to be trying to communicate with this administration. And there are formal ways to do that, but there are also informal ways to do it. You can use social media to make yourself clear. All of these policy makers and the administration have public websites and social media platforms. We need people commenting, engaging, pushing back and sharing stories. I also want people to be thinking about doing that locally. So whether it's with the mayor of your city or the county executive in your town, whether it's your state legislature or your governor, people need to understand that access to really good quality family planning, sexual health is something that is needed in your community and it's something that you use or your neighbors use. Um, I think that that connection of people to policy, it does get lost quite a bit. And, um, you know, I worked on Capitol Hill for a lot of years before I worked out in service delivery and the power of someone's story and the power of, of a lived experience. You're in, everybody who's listening to this is an expert on their own life and their own experience. And all I have to do is just tell the truth about it. So I really encourage people to do that. The second thing I would encourage, and this is a Google thing, is I want you to Google Title X health center and there's a zip code directory available on the Internet where you can actually look up the Title X funded health centers in the area that you live. And you may not be surprised, they may be exactly who you might think, but you may be surprised. And I think one of the things that we support access to contraception and sexual health care can do is raise our own awareness of where services are available. A, that might be helpful to you and may be helpful to a friend, a family member or someone in need of support and help. But also it's an opportunity for you then to keep those folks in mind. Maybe you could send them 20 bucks, maybe you could stop by and see if they need volunteer support. Maybe you could leave a card that says, Hey, I know you're in this community helping people in need. A lot of folks work in this field for a really long time and don't feel recognized and don't feel supported. And I can't tell you how much like a nice word, a recognition of the fact that we're doing good in the community would mean, and those are things you can do locally because again, there's a Title X health center not too far away from anywhere you are in the United States. Um, and I just think it would make people's day to know that folks know that they're there and are glad that they're working in the community to give access to people in need.

Jennie: Clare, thank you so much for doing this.

Clare: So delighted to do it. Love podcasts and so happy to be a part of yours.

Jennie: Great. Thank you. For more information including show notes from this episode and previous episodes. Please visit our website reprosfightback.com. You can also find us on Facebook and Twitter at rePROs Fight Back. 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.