Podcast: Talking Parity and Advocacy with Patrick Kennedy
Former Congressman Patrick Kennedy joins our hosts to talk about mental health and addiction parity, both at the federal and state levels. He shares information about new initiatives, dontdenyme.org and parityregistry.org, designed to help consumers file appeals on their own, if they feel they’ve been wrongly denied coverage by their insurance companies. They speak candidly about the problems faced with regard to parity by those who live with mental health or addiction issues. And finally, they talk about how anyone can become an advocate.
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About Our Guest
Patrick J. Kennedy spent 16 years in the U.S. House of Representatives, serving Rhode Island’s First Congressional District. He is best known as the lead sponsor of the groundbreaking Mental Health Parity and Addiction Equity Act (MHPAEA) of 2008. Also known as The Federal Parity Law, MHPAEA provided millions of Americans, previously denied care, with access to mental health and addiction treatment by requiring insurance companies to treat illnesses of the brain, such as depression and addiction, no more restrictively than illnesses of the body, such as diabetes and cancer. After the death of his father, Senator Edward “Ted” Kennedy in 2011, Patrick left Congress to devote his career to mental health advocacy and enforcement of the Federal Parity Law, pursue a healthier lifestyle, and start a family. Former U.S. Rep. Patrick J. Kennedy went on to found The Kennedy Forum; co-found One Mind; author the New York Times bestseller, A Common Struggle: A Personal Journey Through the Past and Future of Mental Illness and Addiction; and serve on the President’s Commission on Combatting Drug Addiction and the Opioid Crisis. He recently created the Don’t Deny Me campaign to empowers consumers to speak up about illegal insurance denials of mental health and addiction treatment.
PATRICK KENNEDY SHOW TRANSCRIPT
Editor’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.
Narrator 1: Welcome to the Psych Central show, where each episode presents an in-depth look at issues from the field of psychology and mental health – with host Gabe Howard and co-host Vincent M. Wales.
Gabe Howard: Hello everyone and welcome to this week’s episode of the Psych Central Show podcast. My name is Gabe Howard and with me as always is Vincent M. Wales. And today we will be speaking with former Congressman Patrick Kennedy. Beyond that, he really needs no introduction. Patrick, welcome to the show.
Patrick Kennedy: Great to be with you, Gabe.
Gabe Howard: Well we are excited to have you here. For the audience, can you give them, just in case somebody who’s been living under a rock in America or maybe in another country, can you sort of give our audience the one-minute version of who Mr. Kennedy is.
Patrick Kennedy: Well thanks Gabe and Vincent, I appreciate the chance to be on with you and what you’ve done to help spread the word about how we need to change this whole system, or the lack thereof, of mental health and addiction care in this country. Let me just start by saying that I’m honored to be considered as one of the leaders in mental health and addiction treatment public policy and that’s really by default. And that’s because, as a member of Congress, I had the honor of being the number one sponsor of the Mental Health Parity and Addiction Equity Act known as the Mental Health Parity and Addiction Equity Act. And I have to say that I wish I could take a lot of credit for the fact that I was considered as a leader in mental health and addiction, but really as I just said. it was by default because no one else really wanted the distinction of having the words mental health and addiction next to their names as members of Congress. So it fell upon me to be the champion of this piece of legislation that really sought to end the discrimination by payers when it came to them reimbursing for treatment for mental health and addiction. So the law, as I said, is the Mental Health Parity and Addiction Equity Act. It took a number of years for us to ultimately get it passed. And I’m happy to say because of that law and the Affordable Care Act, the ACA, which kind of enshrined the Parity Act as far as the essential health benefits being inclusive of mental health and addiction care, we now have over 60 million Americans who have access to mental health and addiction coverage within their health plans.
Vincent M. Wales: You know here in California, in addition to the federal parity law that you were just talking about, we also have a state parity law. And I imagine that most other states do, as well. How do they differ and are the state ones necessary?
Patrick Kennedy: Oh, the state ones are absolutely crucial because, frankly, the only real enforcement of parity that we’re getting is at the state level… obviously because of our current administration and the fact that they don’t really believe in the health care as a right, and they don’t obviously believe in the ACA, which has been the single greatest piece of legislation for those suffering from these illnesses, given the fact that it covers these illnesses like nothing else that we’ve ever had. We really are relying upon the states to enforce this law, and by enforcement, I mean it’s not enough, as the law says, for there to be no differences in the premiums. The premium costs used to be separate premium costs for mental health. Now that’s no longer the case. There used to be separate deductible. That’s no longer the case. There’s just used to be separate copay. That’s no longer the case. There used to be a lower lifetime cap on insurance coverage, which means that people like myself who racked up a lot of bills early on, as most people do, given the fact these illnesses affect young people predominantly, you know, you find yourself blowing through your lifetime cap. That’s the allotted amount that an insurance company would allow for coverage for mental health. Of course, that was outlawed this well the law. But in addition to that, the parity law says whether you’re inpatient in network or outpatient in network or inpatient out of network or outpatient out of network or you need pharmacy benefits or emergency room benefits, that all of those need to be analogous or comparable, if you will, to what you would receive if you had diabetes or cardiovascular disease or cancer, what have you. And of course, we all know that you would have coverage and all of those different areas of treatment if it were a medical or surgical issue. But what’s never been the case is that you could expect that that same level of coverage can be expected if you have a mental health or addiction issue. And by no means are we even close to that being the reality today. But it’s only real to the extent that we advocate and the best places to advocate, frankly, are in the states within the insurance commissioners’ offices and within the attorneys general offices. In California, you have a very active insurance commissioner who… you have an office of insurance commissioner that really seeks to ensure that no health plan is able to sell insurance in California that doesn’t comply with the Federal or State parity law. The insurance commissioner also is in charge with really due diligence on whether that is enforced. But I might add that, you know, Senator Jim Beall out there is introducing new legislation to really beef up the provisions of your California State parity law. And I’m excited that it really enhances the auditing, if you will, of the more insidious forms of insurance discrimination, and those are in the form of medical management criteria. That’s a fancy word terminology for what insurance companies use to deny you care for mental health and addiction treatment. They say that it doesn’t rise to the level of medical necessity, or they say, oh you can get treatment but, you know, you can’t stay for more than a few days and then you’ve got to go to intensive outpatient, or they say…
Gabe Howard: If I can interrupt you just for a second, Patrick… That was always very interesting to me. My father, growing up, he had physical illnesses. He was a manual laborer, he was a truck driver, so… he had asthma. So I would see the treatment that he would get. He would, you know, break something or hurt his back or whatever and he would go to the doctor until he was better. When I was diagnosed with bipolar disorder, I could go to the doctor for three visits or I could see the psychiatrist twice or I’d have six outpatient visits or a maximum of three days. The criteria for how much care I got wasn’t based on whether or not I was well; it was just based on some arbitrary idea. And that’s really what you’re speaking about when you talk about parity. This idea that if you’re diagnosed with cancer they don’t say, OK, you can see the oncologist every other week for six weeks and then you’re done.
Patrick Kennedy: The end of the rainbow here for all of us is that there should be no exclusions for mental health coverage whatsoever because no one wants to seek mental health care if they can help it, right? This is not something that where people are trying to rack up bills because they got nothing better to do in their lives. And frankly, if you get the evidence-based treatment within the mental health treatment environment… and then frankly, that’s another whole subject, you know, I think we can talk about as well because that has a lot more to do with the accountability that we need upon with respect to the providers. You know, what we’re talking about right now are really the payers, the insurance companies, who really have gotten very little accountability brought to bear when it comes to their denial of treatment. But we also need to make sure that that treatment is evidence-based. But to the point that you’re mentioning, it’s shocking that we still have this being so quick to deny these services when we know that if they’re good services, they can make such a profound impact on the overall health and well-being of the patients. Right? You don’t want to be putting prohibitions and exclusions on this care. When that care is the evidence base, because when it is the evidence base, it transforms people’s lives. And in the process, it dramatically lowers the costs of all other areas of someone’s physical health. Knowing that most of our health care costs are driven by chronic care issues, like I said, diabetes, like your father had asthma, chronic pain, all kinds of gastrointestinal… you know, all kinds of that stuff… most of which is driven by depression, anxiety, addiction, alcoholism. So if you were ever able to really not put caps, if you will, on the coverage like insurers are doing today for mental health and addiction treatment, you would see dramatic reduction in costs in all other areas of medicine which are so costly in the medical and surgical spend. So the bottom line is, it is unbelievable that these payers are too often putting these restrictive medical management criteria upon those seeking care for these diseases, saying, oh well they really don’t need extensive treatment. And by the way, they still neglect to treat these illnesses as the chronic illnesses they are. You know, when push comes to shove and they do pay for it, they often only pay for it when it’s a crisis. And as we both know, both suffering from bipolar disorder, you know, you need to be treated in a chronic care way much like if you had any other chronic illness, diabetes or asthma. If we don’t treat those illnesses only when you have an asthma attack or only when you have a diabetic shock, you know… God forbid we think of preventive care when we think of mental health and addiction.
Vincent M. Wales: Patrick can you talk for a minute about the difficulties that consumers face in navigating the insurance and treatment landscape?
Patrick Kennedy: Yeah so I started something called parityregistry.org, which is a vehicle for people to file appeals themselves when they feel they’ve been wrongfully denied care and in many instances they really aren’t sure that they’ve been denied care in a way that’s violating the parity law, but that they’re willing to file an appeal because it doesn’t seem right to them. So that parityregistry.org – you know by the way, we’ve launched dontdenyme.org, which gets you to the same landing page. And what we’re really trying to do is facilitate for consumers a way for them to file an appeal and to know how to file the best appeal possible. But what’s really important on those websites is the fact that we want to get people to be public wherever they feel comfortable doing so. And that is we have a HIPAA-compliant process, but what we do at the end is we ask people whether they be willing to have their claim be a matter of record for those of us in the advocacy world to use to illustrate the rampant denial of this type of care within our country. And frankly, as a politician, all I need is, you know, a couple dozen cases and that’s enough for me to take to any politician in a state. It’s enough for me to take to the elected attorney general in a state and say, look at this. There’s these cases of denial. By the way, they all are focused on a denial of a certain type. For example, they all employ a concurrent review. That’s when you are in treatment and then all of a sudden, your insurer says, you’re done. You don’t get any more days’ treatment. That’s kind of concurrent review. And then you complain, and they said, oh we’ll give you seventy-two more hours. You know, that’s just the kind of way that they terrorize people who are in treatment. And so there are all kinds of denial. I said there’s a retroactive denial. That’s when you go to treatment. You think that it’s being covered. You find out after you get back that it really isn’t covered or only the first few days were covered. So what we do is really help a person, a consumer, who’s been denied care to spell that out. And then, if enough of them have very similar forms of denial and they’re all by the same insurance company, we need to get to a place where we’re much more systematic when it comes to pushing back on these insurance companies. And the best way we can do that as advocates is to prepare our case. In other words, to do the homework for the insurance commissioner if you can, for the attorney general, not to the extent that we have to lay it all out for them, but we just have to lay out enough to tell them that they would be neglecting their responsibility as insurance commissioner or attorney general if they were not to investigate what we brought to them. OK? And in my view, that’s the way we get real accountability on the payer side as opposed to trying to do this with fifty thousand, one hundred thousand, you know, a hundred million individual claims. That’s never going to do it, if the insurance companies kind of bank on the fact that all these claims are going to be done in isolation. But if you can show a pattern and a practice of denial that is in violation of the law, then you can in other words have a class action… you know, that terminology when it comes to torts, you can have that against these payers, but you can let the state be the one that arbitrates that for you, much like the state of New York really brought, you know, a number of payers including Blue Cross and Cigna and others in to a consent decree because they were in violation of New York parity law.
Gabe Howard: We’ll be right back after these words from our sponsor.
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Vincent M. Wales: And we’re back with Patrick Kennedy speaking about the Don’t Deny Me campaign.
Gabe Howard: On one hand, it’s incredible what you’re doing and I love it and I fully support it because, as somebody who lives with mental illness, I want more people to have the kind of care that I got and to be well, like all of us on this show right now are. But on the other side, it’s so depressing to hear you fought for a law, you got a law, a law was granted, it’s now the law of the land and insurance companies are like, I’ll do whatever I want. And then you had to like sort of go to round two even though you won round one. Where will this end? Do we just keep having to… I mean are we really going to become a country that just has to sue for every little thing because nobody has to follow the rules unless you’re able to go through this long court process? Because the people that have to drive this are people who are already sick. This is a lot. This is a lot.
Patrick Kennedy: It is a lot. You know, not to relitigate the previous presidential election, but if we had had someone in office who was committed to the enforcement of this law and understood it, then we would have an infrastructure on the federal level that, one, would have educated all the 50 states in terms of their fiduciary responsibilities, would have provided the resources for them to do it, would have also had a much greater transparency required at the federal level for any plan on the exchange. And by the way, any plan on the exchange is essentially every plan because all of the insurers are captured within that regulatory infrastructure. So but that didn’t happen and obviously we are where we are, but you, know it’s important also to keep in mind that civil rights in this country, you know, went through very much the same all for the exception of the fact that they had a march on Washington to get civil rights and we and the mental health and addiction community have yet to get our march on Washington. We know that we’ve had great rallies and that’s been very important. And those rallies are increasingly in greater numbers. But when you consider the fact that there’s over twenty-three million Americans in long term recovery from addiction and alcoholism, and you consider the fact that there’s so many more people who are living with depression, anxiety, bipolar, schizophrenia, and you start adding up all the numbers… I mean it really should be the case where we have enormous political power, but because of the shame and stigma of these illnesses, it really cuts in to where we should be strongest and that’s in our numbers. And that’s in our political voice, and because we have stigma and people are living in the shadows and, by the way, all the people were at 12 step recovery like me, you know, we’re all in church basements. We rarely come out so far as many of us think that it’s a violation of the 11th tradition to be good citizens and to really be public in terms of our advocacy of these things. I mean frankly Bill W. – Bill Wilson – went to Congress to testify. Many people in the movement don’t appreciate or remember that that was port testified in front of Senator Hughes from Iowa who himself was in recovery. I’m just saying like there’s a history here and we need to take lessons from history. And the best way to learn from history is learn when it was really successful. In the civil rights movement, it wasn’t enough for them to pass the Civil Rights Act; they then had to have the Voting Rights Act to really give some muscle and teeth to it. And then they had the Voting Rights Act and the Fair Employment Act. It’s an ongoing process. And of course, today that advocacy continues. So I hate to say, but this is never going to end in terms of our need to advocate, but that should be a challenge to all of your listeners to step up. Because I know I’ve got kids and I want them to grow up in a world where they’re not going to have to be so self-conscious about whether they get care for illnesses that are largely genetic. I mean these illnesses are more genetic than any other set of illnesses, so we want our medical system not to discriminate against them the way we’ve been discriminated against because of our illness and the outdated ideas that people had as to whether these illnesses are real or not. So that’s a long way of saying that, yes, we shouldn’t be having to push so hard. This should have been enforced. But, you know, frankly, they had the NAACP suing all across America. Justice Marshall – Thurgood Marshall – was out there fighting fighting fighting. You know, Dr. King kept having to do marches so they were organized, looked at which marches would be best and which places based upon where the advocacy was the strongest and where they could organize a march. We need to do the same. I’m saying all this to say we need our NAACP in the world of mental health and addiction. I’m proud to say the Kennedy Forum has put together a legal work group of some of the best minds who are litigating parity cases all over the country as kind of a first attempt to put that together. But yeah, we need to keep pushing. It’ll never stop.
Vincent M. Wales: Right. Right. You’re right. So, along those lines, how can our listeners become involved? Where can they find out more information on the Don’t Deny Me campaign and tell us what they can do.
Patrick Kennedy: So the dontdenyme.org, as I said, and parityregistry.org are vehicles… you know, they’re part of our KennedyForum.org. And that’s an initiative to really start to map out what are the issues as well. So if people want to become involved, some people want to be big proponents of supportive housing, you know, supportive housing is a crucial element for people to have security and stability so that they could then have their treatment really be most effective. In some places, they want to advocate for, you know, the right treatments that are not as available in some places as they are other places. The bottom line is, in every other area, whether it’s the environment, whether a Labor Law, you know, whatever it is, all of them have A to Z list of issues and we in our field need to get much more sophisticated in terms of what we do to advocate on behalf of a whole range of issues because, in order to tackle this epidemic, we need to be about tackling it from all fronts. We need to be in early with prevention. Then there’s secondary interventions and tertiary interventions and making sure that those are adequate as well. You know on the tertiary side, the ideas or otherwise known as kind of acute care side, we need adequate inpatient beds. There really are not the adequate number of inpatient psychiatric beds or even addiction beds, even though our gold standard is to treat people in their community in the least restrictive environment possible. That said, everybody, depending on the severity of their illness, they shouldn’t be precluded from gaining access to acute care if they need it. My point is that there are a whole lot of different issues that people can advocate for. They can advocate for criminal justice reform. If you had supportive living, supportive housing, community supports, in many instances people would not have to cycle in and out of the criminal justice system all because of a lack of necessary supports that keep them stable and out of the criminal justice system. In our schools, there’s so much to be done to build psychological resilience, social emotional learning, problem solving skills, stress management, all early on so that young people get a sense that the brain is not anything to take for granted, that we have to stay mentally fit just like we try to stay physically fit in the rest of our bodies, and by the way, that’s important for not only those who are at risk for mental illness, depression, addiction, and the like, it’s good for everybody. So the bottom line is we have so much to advocate for on so many different fronts and there are ways for people to pick where they want to be involved and then to advocate. And we need to expand our legislative advocacy. Who we elect as members of Congress, state legislators, as governors, obviously, as president. We’ve got a lot of work to do and we need a lot of people to help us do that. So any one of your listeners who is listening, I’m only mentioning all of that as a way of inviting them to know that there are many, many ways that they can be involved.
Vincent M. Wales: Thank you.
Gabe Howard: Thank you so much and obviously, by listening, you are involved but you can always do more. Hook up with your local non-profit organization, your mental health organization, check out Patrick Kennedy’s web sites. Do a Google search. There’s lots of ways to get involved. Don’t sit on the sidelines any longer. Patrick, thank you so much for being on the show. We really appreciate it. It goes fast, doesn’t it?
Patrick Kennedy: It does. Gabe, I appreciate it. And Vincent, thank you so much. I look forward to seeing you guys again. And I… Let’s keep trudging the road of happy destiny.
Vincent M. Wales: We will.
Gabe Howard: Absolutely. Thank you everyone for tuning in. And remember you can get one week of free, convenient, affordable, private, online counselling anytime, anywhere by visiting BetterHelp.com/PsychCentral. We’ll see everybody next week.
Narrator 1: Thank you for listening to the Psych Central Show. Please rate, review, and subscribe on iTunes or wherever you found this podcast. We encourage you to share our show on social media and with friends and family. Previous episodes can be found at PsychCentral.com/show. PsychCentral.com is the internet’s oldest and largest independent mental health website. Psych Central is overseen by Dr. John Grohol, a mental health expert and one of the pioneering leaders in online mental health. Our host, Gabe Howard, is an award-winning writer and speaker who travels nationally. You can find more information on Gabe at GabeHoward.com. Our co-host, Vincent M. Wales, is a trained suicide prevention crisis counselor and author of several award-winning speculative fiction novels. You can learn more about Vincent at VincentMWales.com. If you have feedback about the show, please email firstname.lastname@example.org.
About The Psych Central Show Podcast Hosts
Gabe Howard is an award-winning writer and speaker who lives with bipolar and anxiety disorders. He is also one of the co-hosts of the popular show, A Bipolar, a Schizophrenic, and a Podcast. As a speaker, he travels nationally and is available to make your event stand out. To work with Gabe, please visit his website, gabehoward.com.
Vincent M. Wales is a former suicide prevention counselor who lives with persistent depressive disorder. He is also the author of several award-winning novels and creator of the costumed hero, Dynamistress. Visit his websites at www.vincentmwales.com and www.dynamistress.com.
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Central Podcast, T. (2019). Podcast: Talking Parity and Advocacy with Patrick Kennedy. Psych Central. Retrieved on September 28, 2020, from https://psychcentral.com/blog/podcast-talking-parity-and-advocacy-with-patrick-kennedy/