Transcript of BioCentury This Week TV Episode 202
Rep. Tim Murphy (R-Pa.)
Paul Gionfriddo, President and CEO, Mental Health America
Ronald Honberg, National Director of Policy and Legal Affairs, National Alliance on Mental Illness
Richard Pops, Chairman and CEO, Alkermes
PRODUCTS, COMPANIES, INSTITUTIONS AND PEOPLE MENTIONED
Erin McCallister, Senior Editor
ERIN MCCALLISTER: Are mentally ill patients getting access to the drugs and services they need, or is the system broken? We'll hear from a congressman, a drug developer, and patient group about how to break the mental block. I'm Erin McCallister. Welcome to BioCentury This Week.
NARRATOR: Connecting patients, scientists, innovators, and policymakers to the future of medicine, BioCentury This Week.
ERIN MCCALLISTER: Outbreaks and mass violence and continued high incarceration rates for the mentally ill have the Obama administration, Congress, and patients all calling for better access to mental health treatments. The Affordable Care Act opened the door by including mental health services as one of 10 essential health benefits that insurance companies must cover.
But plans are still restrictive about the services provided and the drugs covered. Many large pharmas are starting to invest less in new drugs for mental illness. To help fix the problem, the Obama administration has allocated more money to community centers that treat mentally ill patients.
And Representative Tim Murphy has a bill in Congress to help coordinate that care on a national level.
STEVE USDIN: I'm pleased to be joined on Capitol Hill by Dr. Tim Murphy, who represents Pennsylvania in the House of Representatives and is also a clinical psychologist. Dr. Murphy, why is mental health access legislation needed? What are you trying to accomplish with your bill?
DR. TIM MURPHY: Well, we have 60 million Americans with mental illness and about 10 million Americans with severe mental illness. And of that, almost 4 million who are not in treatment. It takes an average of 112 weeks for a person with severe mental illness to get their first treatment. What gets the news in the United States is when there's a shooting. But what's most important to understand it's most people with severe mental illness are victims of crimes.
You have 40,000 suicide deaths in this country every year, a million suicide attempts, massive problems in this country that we better come to terms with because it's a diagnosable and treatable disease that the federal government has set several barriers to keep people from getting treatment. And we need to remove those barriers and help people.
STEVE USDIN: And in lieu of treatment, I guess, a lot of people are ending up in the prison system also.
DR. TIM MURPHY: Sure. We had 550,000 hospital beds in this country in the 1950s. Now we have 40,000. But the population of the United States has doubled. So where do those people go? They tend to end up in jail, where it's much worse for them.
They tend to be homeless, suicide, unemployed, so many levels of problems that they have. We can't deny that this exists. And unfortunately society oftentimes wants to deny it.
STEVE USDIN: So one of the big controversies about your legislation is around involuntary treatment. And there is a kind of a dark history in the United States of abuses, ethical abuses and involuntary treatment in the past. Why do you think it's necessary, and why do you think there's so much controversy about it?
DR. TIM MURPHY: Well, it's controversial because it's misunderstood. I mean, there was controversy in the Salem witch trials, but we don't think that there's witches out there doing these things and we don't have to burn people at the stake. What happened was a lot of people used to be put in hospitals when we didn't understand mental illness.
We did not have medication for them. Now we do. It is a brain disease. And some people still believe that these folks will at some point decide that they want to get better. But here's what's very important. A person with schizophrenia and some of these other illnesses, their brain is actually deteriorating.
It's been identified over 100 genetic markers that they have, someone with schizophrenia. And about 40% of them are clinically neurologically unaware that they have a problem. They don't just think the FBI's after them.
They don't just think someone's plant electrodes in their brain. They don't just think they're the messiah. They actually believe it, and so they're resistant to treatment. Now, if that's not harming anybody, many times people say, let it go.
But what happens is many of these folks are cycling through prisons and the revolving door of hospital emergency rooms or in and out of hospitals because they don't understand the treatment. And I believe they have a right to get better. And some of these folks say, no, they have a right to be homeless. They have a right to be sick.
I don't think so. I adamantly disagree with that. These people have a right to access to treatment so they can get better. When we believe that it's OK with a person hallucinating to refuse treatment, we would not do that with someone with Alzheimer's disease and say, well, grandma just doesn't understand, so we're going to let her wander the streets at night.
Absolutely not. We know it's a neurological problem, and we deal with it. The people who are mentally ill deserve that same right to treatment.
STEVE USDIN: So one of the other things that's been a barrier to getting your legislation passed quite honestly is people have a vested financial interest in the status quo.
DR. TIM MURPHY: Absolutely. There are many groups out there who get federal money to keep their status quo. Part of my bill also says, if what you're doing does not yield results, that funding will be pulled. I believe that's critically important.
This country spends $130 billion on the federal level with mental illness alone, and states spend a lot more, although much of that is in jails. And I think some of those treatments are very effective and wonderful and we should continue to fund them.
And some of them quite frankly are useless or worse than useless if they are keeping someone from getting effective treatment. I'm tired of reading headlines of someone who has killed themselves, or harmed their family, or lost their job, or been in prison and then ended up getting put in solitary confinement because they're so mentally ill.
Our country oftentimes acts like some Third World country with this, and it is shameful that we are not addressing these mental health issues as a disease and treating people.
STEVE USDIN: One of the other issues that your legislation addresses is privacy issues.
DR. TIM MURPHY: Well, what happens -- the federal government has a law called the HIPAA laws -- Health Insurance Portability and Privacy Act -- which was originally designed to keep medical records from being released to people who had no business knowing them, in other words to protect the patient.
It gets distorted to the point where a parent may bring a child, an adult child, into an emergency room who has years of treatment, paranoid schizophrenia, bipolar disease, severe depression on medication. And sometimes hospitals say, well, we can't even talk to you.
Well, the fact is they can, and they ought to be able to. And the second thing is someone may be discharged from a hospital or discharged with some care and saying, this is the medication you take. Here's your next appointment. And the family members aren't even told what it is.
So the person doesn't take their medication. They don't go to the next appointment. It worsens. So our bill wants to make sure that those family members who need to know just those facts of what to help with treatment -- they don't have to know everything else going on in the person's life. Those things ought to be kept confidential.
But things that are essential and necessary for the continued treatment of that person to have the right to treatment or the right to get better, we believe that there is times when using the ethical judgment of the doctors involved, you can reveal some limited information to the family. And that's it.
It's not overhauling the law. It's not changing things massively. It's understanding that for the best interests of that patient and for their care, that sometimes someone has to know some of those little elements, and the doctors have to listen to some of those little elements from the family.
STEVE USDIN: And is it also kind of a barrier maybe perhaps to passing your legislation and a barrier to getting appropriate resources, the idea that mental illness, it's a behavioral illness. It's something people can kind of will away.
DR. TIM MURPHY: Yeah, you're bringing up a great point. I think some of the stigma of mental illness is that people just don't understand it, and they just think, oh, pull up your bootstraps. Suck it up. You can get better.
That's simply not the case. Sometimes, if a person is just the worried well or feeling sorry for themselves, yeah. But when you're dealing with a neurological medical based condition such as schizophrenia, bipolar, depression, and other -- there's other spectrums in there -- autism of disorders, it is not enough just to say that.
That's simply not the case. And then society's prejudice, their bigotry toward this, saying, well you ought to just get better. But again, if that person doesn't realize they're ill and therefore they're not going to take their medication. They think all doctors are somehow after them. They're not going to do that.
So what we have to recognize as a society is, there's some people who ought to be compassionate enough to just help. We would do that with children. We do that with the elderly. We do that with people with neurological diseases.
When our country reaches that point where we're saying we're going to deal with mental illness as a true illness and not just the worried well or not just pretend it's not there. When our country reaches that point, we will have rediscovered fire.
STEVE USDIN: What's it going to take to get over the hump to actually get this passed? Obviously you could get it through the House relatively easily, but you're also going to have to bring your Senate colleagues along.
DR. TIM MURPHY: I think people across America, every family member who has someone with mental illness, ought to be writing their congressman or senator and says, pleased pass HR-3717.
It's the only bill that Congress has had on the books for years and years and years, perhaps half a century, which actually reforms our mental health system for those who are in a mental health crisis, those who are critically ill with mental illness instead of just pretending that they're not there.
STEVE USDIN: Well, thanks very much Dr. Murphy. Next, Erin McCallister continues the discussion about access to mental health treatment.
NARRATOR: You're watching BioCentury This Week.
ERIN MCCALLISTER: Today, we'll talk about what needs to be done to improve access to mental health treatment. I'm pleased to be joined by Ronald Honberg, National Director of Policy and Legal Affairs at the National Alliance on Mental Illness, Paul Gionfriddo, President and CEO of Mental Health America, and Richard Pops, Chairman and CEO of drug company Alkermes. Ron, I'd like to start with you. We have all this momentum with ACA and the President with money for community centers. What still needs to be done?
RONALD HONBERG: Really several things. First of all, those laws are very helpful steps. You mentioned the Affordable Care Act. Congress passed a parity law several years ago requiring equal coverage of mental health care with physical health care. But we have a long way to go to actually effectively implement those laws. And those laws have to be -- a lot of education needs to take place so that insurance companies properly implement them, and people at local levels understand them. There needs to be better enforcement.
We also, though, need to invest more in mental health care in the public sector, which is where most people with serious mental illness get their care. And that's not just treatment. That's not just medications, although medications are very important, but also social services, the kind of essential supports that people need, like housing, like help with getting employment, like intensive case management, and coordination of services. So more investment of dollars, better investment of dollars, but also making sure that we spend those dollars wisely.
ERIN MCCALLISTER: And, Paul, one of the things that I know that you've talked a lot about is the need to move upstream. We see these high incarceration rates. Can you talk more about that need?
PAUL GIONFRIDDO: Yeah. We use this danger to self or other standard, often, to determine whether or not people get treatment. What I like to say is that this makes mental illnesses the only chronic conditions we wait till stage four to guarantee treatment. And then often, we do that through incarceration here.
We very badly need to move upstream. We need to take people on at the earliest stages of the disease processes. Because the truth is that whenever there's a tragedy, the parents have been involved and know. The peers have recognized it. The teachers have recognized things way upstream. And if we move 10 years upstream and take advantage of all the tools and resources that we've got, we won't be waiting till crisis time. We won't be waiting till stage four. And we will have an opportunity to change the trajectory of people's lives. And that's really what we should be about here.
ERIN MCCALLISTER: OK. And Richard, I know that you've had some interesting things to say on this notion of moving upstream and the incarceration rates. Can you talk a little bit more in the vein of what Paul was talking about as well?
RICHARD POPS: Well, what Paul says is absolutely consistent with what's happening in the brain as well. A disease like schizophrenia is a chronic, progressive, deteriorating disease. So if we wait for patients to have multiple relapses to the point where they get to the stage four, we're losing brain function and the ability to actually intervene earlier and preserve functional capacity for longer periods of time. So from the pharmacology point of view, it's all consistent with this point of view.
ERIN MCCALLISTER: Right. And when we talk about diagnosing earlier, screening earlier, are we really equipped with the tools to do that? Is an educator really equipped to screen a child for whether or not what they see is unruly behavior? You know, where's that balance there? Are we there yet?
PAUL GIONFRIDDO: Yeah. We're there. I think certainly people can screen themselves. I mean, the tools we're talking about are not asking people to do a Rorschach test or something like that and figure it out. These are simple questions and answers that could be asked of everybody, and frankly should be asked of parents for all children during all pediatric visits. All of us should be asked these kinds of questions during our regular physicals.
Why is it that it's OK to screen for vision? It's OK to screen for hearing. It's OK to screen for proper dental care. But it's not OK to screen for mental health. That's what we're talking about doing here. And if we did that, we would be treating this like every other chronic condition, and we would be intervening early so that people with schizophrenia, for example, like my son, would have an opportunity to get into treatment at a time when it would make a difference, not after it's too late.
RICHARD POPS: And you all have web-based tools that are quite effective that patients take advantage of.
RONALD HONBERG: And we also need to listen to families. Families are oftentimes, very sadly, not listened to, written out of the process. And yet, they're in the best position, oftentimes, to see the early signs and symptoms of mental illness, that time, as Paul said so well, that it is so crucial to intervene.
ERIN MCCALLISTER: OK well great we'll continue this discussion when we come back about access to care for the mentally ill. But first, here's a look at the coverage and copays for mental health drugs and plan sold on the exchanges.
NARRATOR: Now back to BioCentury This Week.
ERIN MCCALLISTER: We're talking about access to mental health care with Ronald Honberg at the National Alliance on Mental Illness, Paul Gionfriddo of Mental Health America, and Richard Pops of Alkermes. Richard, when we left the last segment, we were talking about the need to kind of move upstream and screen patients earlier. But are we at a point where we have the right drugs for the right patients to actually be able to treat them earlier in their disease?
RICHARD POPS: I think we do. And that's not to say that the drugs we have are perfect. We have a long way to go. And I'm quite optimistic about where we're going with new drug development. But the drugs that we have now, particularly in some of the new embodiments that we and others are developing -- for example, long-acting injectable forms of well-tolerated drugs -- make a lot of sense to use earlier in the disease in dosage forms that aren't just good molecules in terms of interacting with brain receptors, but present themselves in dosage forms that patients can take reliably over long periods of time. Because this intersection between the pharmacology and the ability to use the medicine in their daily lives for long periods of time, that's where the magic is in coming up with the best drugs.
ERIN MCCALLISTER: And Ron, we talk about treating earlier. But one of the big problems in mental health illnesses is adherence and getting patients to stay on the drugs. And not only is diagnosis an issue, but then once you find the right treatment, you've got to keep them on the drug. From a patient perspective, what's going on? What's that mindset, and how do we --
RONALD HONBERG: Well adherence can be a problem. But there are many reasons for that. Sometimes it's because we make it very difficult for people to adhere. We erect so many barriers to people getting the kind of help that they need. Sometimes we also don't pay attention to the whole body and to issues around wellness. So the medications are, in fact, oftentimes lifesaving. They do have side effects. And all medications have side effects.
If we take medications for hypertension or statins for high cholesterol, those have potential side effects. We're educated about those. We know what to look for. We know what steps to take to avoid those side effects. That tends not to happen with mental illness. And, in fact, historically we haven't paid attention to things like monitoring blood pressure, monitoring weight gain, the whole body, the whole person. So that's a factor as well.
Another factor is that because we wait so long to institute treatment stage four, as Paul said, at that point, some people may be at a point where they don't recognize their need for treatment. They may be resistant to treatment. Early intervention and efforts to educate the person, to de-stigmatize mental illness, to teach the person about what they need to do to stay well is so important. And that, in and of itself, can improve adherence.
ERIN MCCALLISTER: Right. And I think that you mentioned something there that I know that, Paul -- in terms of this need to -- one of the things that keep patients non-adherent is that they don't feel normal when they're on their drug because they're not used to feeling that way, when in reality -- so can you talk a little bit about that "I don't feel normal," so they don't take the drug?
PAUL GIONFRIDDO: Sure. And I think that two things, basically, are worth mentioning here. One is that when it's a matter of public policy, we don't give people access to the right drug for their condition at the right time, that's a problem. And sometimes we fail to do that. Sometimes government builds up barriers to people actually getting the right drug at the right time.
But often, if we've allowed the disease to progress so far, we may end up in situations like mine, anecdotally, where my son, at one point, said to me several years into his illness that one reason he didn't like taking a particular medication that I thought was working rather effectively by then -- he said, "Dad, I just don't feel like myself when I take it." I said, "Well, what do you mean?" He said, "Well, I feel too even." And I said, "Well, what do you mean, Tim, feel too even?" He said, "Well, dad it makes me feel like you." He said, "But I'm this way. I'm up and down. And I want to be up and down."
And so if we had had an opportunity to have Tim feel more even back 10 years before that time, when we were kind of dealing with the wrong diagnosis and dealing with, we'll try this first and try that first, I think we would have had a better opportunity for feeling even to be the norm for Tim as opposed to feeling desperately ill being the norm for Tim.
ERIN MCCALLISTER: Richard, and just real quickly, I know that as a drug developer, you listen to patients a lot and try to incorporate that into drug development.
RICHARD POPS: Exactly. It's interesting, because the FDA approvability of a medicine is based typically on well-validated scores that measure hard endpoints. But we're increasingly listening to these types of stories and trying to incorporate that -- and hopefully, ultimately, into the label so we can communicate to patients and physicians about these different attributes of medicines. Because tolerability, in this world, is every bit as important as efficacy.
ERIN MCCALLISTER: OK. We'll continue our discussion in a moment. But first, here's what President Barack Obama had to say about access to care for the mentally ill.
BARACK OBAMA: Even though 3/4 of mental illnesses emerge by the age of 24, only about half of children with mental health problems receive treatment. Now, think about it. We wouldn't accept it if only 40% of Americans with cancers got treatment. We wouldn't accept it if only half of young people with diabetes got help. Why should we accept it when it comes to mental health? It doesn't make any sense.
ERIN MCALLISTER: We're finishing up our discussion on access to mental health treatments with Richard Pops of Alkermes, Ron Honberg of NAMI, and Paul Gionfriddo with Mental Health America. I want to pick up on one of the things that we mentioned in the last segment, which was this notion of cost and restricting access to medications. And, you know, earlier, Paul, you mentioned and you compared with cardiovascular diseases and you wouldn't let it get to this stage with cancer. And a lot of things there about reductions in hospitalization to justify the treatment cost. Here, this is a much different sort of cost avoidance, if you will, by treating these patients earlier. Can you talk more about what some of those avoided costs are?
PAUL GIONFRIDDO, PRESIDENT AND CEO: Well if you want to compare to other diseases, the way we handle people who have often serious mental illnesses is to say to them, that in effect, you can will this away. You know that you just have to behave differently. We call these behavioral illnesses, after all. And it's akin to saying to somebody with congestive heart failure that you can run a marathon if only you try. Because it only involves putting one foot in front of the other, and everybody can do that.
And so I think that the false economies really are rooted in this understanding of this constellation of chronic diseases as different somehow, because it's behavioral, from the others. And all that means is they affect the brain as opposed to affecting the heart, the kidneys, or some other organ of the body. Why is it that we can't put our resources earlier into diseases that affect the brain? Because we do know that when we move down the road, if we're going to treat them effectively, we're going to treat them expensively. And that's just a given, whether it's this set of diseases or any other set of chronic diseases. So let's do it up front when it's less expensive.
ERIN MCALLISTER: And as we talk about sort of moving upstream and treating them earlier, whether it's through services, counseling services, or treatments, do we reach a point where we're over-diagnosing and we're over-medicating? What's your perspective on that?
RONALD HONBERG: I actually think -- of course, there are examples of wrong diagnoses at times. But if anything, we're not diagnosing people when they should be. And we're not equipping educators, clergy, primary care physicians, and others who are really in a position to spot the potential signs of mental illness with the tools that they need to take steps to intervene and make sure that people get connected with the kind of services they need. Again, there's still a taboo. There's still such a lack of understanding about what these illnesses are, and that they're real. They're every bit as real as heart disease, cancer, and diabetes. And they're very, very treatable. We need to do a whole lot better job of educating the public. I think we've made some progress in the last year or two, but we need to work a lot harder to have that happen.
ERIN MCALLISTER: And Richard, your take on this notion of over-medicating and over-diagnosing? We're talking about children that are 13, 14 years old. And some parents -- we have a whole anti-vaccine movement out there. So this similar population of children, what would you say to that notion?
RICHARD POPS: Well we, for example, are really interested in the treatment of schizophrenia. It's a chronic, progressive disease that affects millions of people. This is a disease that is diagnosed usually in the early 20s, right. So there's all kinds of diagnostic criteria where it's not a disease that's over-diagnosed. I agree it's under-diagnosed. And more to the point made earlier, there's often very clear signs of aggressivity in certain patients and noncompliance that we can pick up early in the manifestation of their disease. Yet we really don't react. We don't act aggressively to treat. And -- go ahead.
RONALD HONBERG: One quick point I'd like to make is that, in fact, in some of the sites that are doing early intervention in psychosis, medication is not the first tool that's being used. It's low doses of medication along with psychosocial support. So we really need to dispel that myth that this is all about medicating kids earlier. It's not. It's about intervening earlier. It's providing supports to them and their families.
RICHARD POPS: And then, the course of each patient will take its own independent course. And if we have the right response to that, that's why we need a range of medicines and a range of approaches. But that's not what's being done today.
ERIN MCALLISTER: All right. Well, that's this week's show. I'd like to thank my guests, Paul Gionfriddo, Ron Honberg, and Richard Pops. Remember to share your thoughts about today's show on Twitter. Join the conversation by using the hashtag #BioCenturyTV. For Steve Usdin, I'm Erin McAllister. Thanks for watching.