Overdose Prevention and Patient Safety Act

Floor Speech

Date: June 20, 2018
Location: Washington, DC

Mr. Speaker, I rise in opposition to H.R. 6082, the Overdose Prevention and Patient Safety Act. This legislation would greatly harm our efforts to combat the opioid epidemic. If we really want to turn the tide on this crisis, we must find ways to get more people into treatment for opioid use disorder.

In 2016, there were about 21 million Americans aged 12 or older in need of substance use disorder treatment, but only 4 million of those 21 million actually received treatment. That means 17 million people are going without the treatment they need. Failure to get individuals with opioid use disorder into treatment increases risk of fatal and nonfatal overdoses as people continue to seek out illicit opioids as part of their addiction. The increasing presence of fentanyl in our drug supply only heightens this concern.

Strategies that increase the number of people getting into and remaining in treatment are particularly important because, as these treatment statistics show, major challenges exist to getting people with substance use disorders to enter treatment in the first place. And this House should not--and I stress ``should not''--take any action that puts at risk people seeking treatment for any substance use disorder, but particularly opioid use disorders.

Unfortunately, this bill risks doing just that: reducing the number of people willing to come forward and remain in treatment because they worry about the negative consequences that seeking treatment can have on their lives. And this is a very real concern.

This bill weakens privacy protections that must be in place for some people to feel comfortable about starting treatment for their substance use disorder. Ensuring strong privacy protections is critical to maintaining an individual's trust in the healthcare system and a willingness to obtain needed health services, and these protections are especially important where very sensitive information is concerned.

The information that may be included in the treatment records of a substance use disorder patient are particularly sensitive because disclosure of substance use disorder information can create tangible vulnerabilities that are not the same as other medical conditions. For example, you are not incarcerated for having a heart attack; you cannot legally be fired for having cancer; and you are not denied visitation to your children due to sleep apnea.

According to SAMHSA, the negative consequences that can result from the disclosure of an individual's substance use disorder treatment record can include loss of employment, loss of housing, loss of child custody, discrimination by medical professionals and insurers, arrest, prosecution, and incarceration. These are real risks that keep people from getting treatment in the first place.

While I understand that the rollback of the existing privacy protections to the HIPAA standard would limit permissible disclosures without patient consent to healthcare organizations, this ignores the reality: It may be illegal for information to be disclosed outside these healthcare organizations, but we know, Mr. Speaker, that information does get out. Breaches do happen.

Remember the recent large-scale Aetna breach that disclosed some of its members' HIV status?

But there are also small-scale breaches that don't make the news that can have devastating consequences for patients trying to recover and get treatment. For example, a recent ProPublica investigation detailed instances where a healthcare organization's employee peeked at the record of a patient 61 times and posted details on Facebook, while another improperly shared a patient's health information with the patient's parole officer. Breaches such as this are very concerning and could occur more often as a result of this legislation.

While I appreciate the sponsor's efforts to alleviate these concerns, I do not believe the potential harm that could be caused by eliminating the patient consent requirement under existing law for treatment, payment, and healthcare operations can be remedied through the measures included in this bill. The inclusion of these provisions cannot compensate for the risk of stigma, discrimination, and negative health and life outcomes for individuals with opioid use disorder that could result from the weakening of the existing privacy protections, and that is why every substance use disorder patient group has come out in opposition to this bill.

According to the Campaign to Protect Patient Privacy Rights, a coalition of more than 100 organizations: ``Using the weaker HIPAA privacy rule standard of allowing disclosure of substance use disorder information without patient consent for treatment, payment, and healthcare operations will contribute to the existing level of discrimination and harm to people living with substance use disorders.''

The Campaign goes on to say: ``This will only result in more people who need substance use disorder treatment being discouraged and afraid to seek the healthcare they need during the Nation's worst opioid crisis.''

This is a risk we simply should not take, and yet the majority is bringing this bill to the floor today, despite the very real concerns of these experts. These groups uniquely understand what is at stake from this legislation because many of their members live with or are in fear of the negative consequences that result from the disclosure of substance use disorder diagnosis and treatment information.

In fact, the negative consequences that will result from the disclosure of someone's substance use disorder would solely affect that individual and their family. They will bear the burden if we get this wrong. They could be at risk of potentially losing custody of their child and their freedom by the increased risk of improper disclosure of their medical record if this bill becomes law.

These risks may simply just keep them from seeking potentially lifesaving treatment. That is why substance use disorder treatment providers have also raised concerns.

The South Carolina Association of Opioid Dependence explained: ``Even with the growing awareness that substance use disorders are a disease, the unfortunate truth is that persons with substance use disorder are still actively discriminated against . . . such as a baby being taken away from a new mother because she is on methadone for an opioid use disorder, despite longstanding compliance with her treatment and abstinence from illegal drug use.''

Another provider, Raise the Bottom Addiction Treatment, one of two medical-assisted treatment facilities in Idaho, explained that ``our patients come from every walk of life, including professionals and executives within our community. Their anonymity and privacy is of utmost importance because their careers, families, and livelihood often depend on it.

``Knowing that people may seek treatment without fear of backlash and discrimination is often a deciding factor when considering entering treatment.

``To undo this protection will deeply affect one's ability and willingness to seek help. . . . Not only can the members of our community not afford to lose their right to confidentiality, but we as a nation cannot afford to move backwards in our fight to combat this opiate crisis.''

So again, Mr. Speaker, these are the words of experts on the frontline fighting this epidemic. People who suffer from substance use disorder should be able to decide with whom to share their treatment records from programs and for what purposes. Those rights are taken away from them under this legislation, and I believe that is wrong.

As we face a tragic national drug abuse problem, the scale of which our country has never seen, I believe maintaining the heightened privacy protections under existing law remains vital to ensuring all individuals with substance use disorder can seek treatment for their substance use disorder with confidence that their right to privacy will be protected. To do otherwise at this time is just too great a risk, and I strongly urge my colleagues to listen to the experts on the subject and to vote ``no'' on this legislation.

Mr. Speaker, proponents of this legislation argue that taking away patients' privacy rights related to substance use disorder treatment records is okay because we would be applying the HIPAA standard that applies to other sensitive health conditions like HIV, but I strongly disagree.

Individuals with substance use disorder face risk because of their medical conditions that those with other medical conditions do not. According to SAMHSA, those negative consequences include loss of employment, loss of housing, loss of child custody, discrimination by medical professionals and insurers, arrests, prosecution, and incarceration.

Unlike other medical conditions, including HIV, you can be incarcerated, legally fired, and denied visitation with your children due to your substance use disorder.

So let me paint this picture with a few examples.

A 20-year-old pregnant woman in Wisconsin voluntarily went to a hospital to seek treatment for addiction to the opiate OxyContin. Rather than providing treatment, the hospital called State authorities to report this woman. She was taken into custody and held for several weeks before a judge ordered her released.

Another example provided to the committee from a provider in Maryland explained:

Some time ago, we had a young lady in our methadone maintenance program who committed suicide. She had turned her life around. She was in college, working full time, owned her own car, was purchasing a house, and was no longer using illicit substances. She had to complete probation for her crimes that she had committed while she was actively using these drugs.

Her mother did not know she was in methadone treatment. She did not want her mother to know because her mother did not agree with methadone, and the judge found out she was in the methadone maintenance program and disclosed it in a court hearing with her mother present.

The judge and her mother insisted that she ``get off that stuff,'' and she complied only because of the pressure from both to do so.

She began abusing illicit substances and participating in illegal activity to obtain those substances. The guilt and shame of returning to what she described as a life of hell led her to write a suicide note and end her life.

Experiences like this, in addition to stories of individuals with substance use disorder who have lost jobs, housing, and child custody because of their substance use disorder, are reasons that some individuals with substance use disorder fear coming forward to enter treatment due to the negative consequences that result. It is why more than 100 groups, including AIDS United, joined the campaign to protect patient privacy rights. They have joined together to fight to protect the heightened privacy protections that exist under existing law.

Further, unlike the proponents of this legislation contend, the existing law is not an anomaly. States like Florida have laws requiring written patient consent for the sharing of a patient's substance use disorder and mental health treatment records, while others like New York, Kentucky, and Texas have such requirements for the sharing of HIV records. Other States have such requirements for reproductive health treatment records.

Further, the existing law is consistent with the confidentiality protections applied to substance use disorder treatment records. In fact, the law governing the confidentiality of VA medical records, 38 U.S.C. 7332, is consistent with and broader than part 2. Unlike that law, the VA cannot share a patient's substance use disorder, HIV, or sickle cell anemia treatment records with another provider without written patient consent.

So, Mr. Speaker, I want to stress that I do believe that we can learn an important lesson from our response to HIV, particularly during the height of the AIDS epidemic. A critical part of this Nation's response to the AIDS epidemic was increasing the privacy protections applied to HIV medical records. Such action was taken because people were afraid to enter treatment for HIV/AIDS because of the negative consequences that could result.

In the midst of the opioid epidemic, this bill would result in doing just the opposite: lowering the privacy protections applied to substance use disorder medical records despite the fact that, like during the AIDS epidemic, some individuals with substance use disorder remain afraid to enter treatment because of the negative consequences that result. And in many cases, they only do so out of the part 2 assurances that they can control to whom and for what purposes their treatment record is shared.

The increased stigma, discrimination, and criminalization faced by people with substance use disorder support the maintenance of the heightened privacy protections under existing law, in my opinion. And for some individuals, it is these privacy protections that make them feel safe to enter and remain in treatment for their substance use disorder. I am afraid that by passing this bill we could be creating a barrier that will keep people from getting the treatment they need, and that is a risk I am simply not willing to take.

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Mr. PALLONE.

Mr. Speaker, some of the proponents of this bill also mentioned the opiate use disorder situations in emergency rooms as a justification for the legislation, but I just want to say, Mr. Speaker, I think it is important to note that the existing law includes an exception to the patient consent requirement. A provider can access a patient's substance use disorder treatment records in the case of an emergency as determined by the provider without patient consent.

Additionally, nothing in the existing law prevents any provider from asking their patient about their substance use disorder history before prescribing any opioid, especially in the midst of the opioid epidemic. Every provider should ask patients about their opioid use disorder history, and, therefore, under the existing law and every other privacy law, the doctor can learn of a patient's opiate use disorder history by simply asking the patient that.

That remains, in my opinion, the optimum way of learning a patient's medical history, because currently our electronic health records aren't interoperable in many cases. Those underlying interoperability issues that prevent information sharing, including the part 2 information in cases where a patient has agreed to share their information with providers, aren't going to be solved by this bill.

Mr. Speaker, I mentioned earlier the various groups that are opposed to this legislation because of the privacy concerns, and I actually would like to read or go through some sections from this letter that was sent to Chairman Walden and me from over 100 groups, including the New Jersey Association of Mental Health and Addiction Agencies.

And they say, Mr. Speaker:

Dear Chairman Walden and Ranking Member Pallone:

We, the undersigned national, State, and local organizations strongly support maintaining the core protections of the Federal substance use disorder patient confidentiality law and its regulations, referred to collectively as part 2.

And they say:

We remain concerned that using a weaker HIPAA privacy rule standard of allowing disclosure of substance use disorder information without patient consent or other purposes will contribute to the existing level of discrimination and harm to people living with substance use disorders. This will only result in more people who need substance use disorder treatment being discouraged and afraid to seek the healthcare they need during the Nation's worst opioid crisis.

We strongly support maintaining part 2's current core protections for substance use disorder information instead of those weaker HIPAA privacy standards for the following reasons.

And there are five.

One, the heightened privacy protections in part 2 are as critical today as they were when they were enacted more than 40 years ago and must be preserved.

Two, in the midst of the worst opioid epidemic in our Nation's history, we must do everything possible to increase, not decrease, the number of people who seek treatment.

Three, substance use disorder is unique among medical conditions because of its criminal and civil consequences and the rampant discrimination people face.

Four, with so much at stake, patients in substance use disorder treatment should retain the right to consent when and to whom their records are disclosed, as currently found in part 2.

Five, effective integration of substance use disorder treatment with the rest of the healthcare system is critically important, and information exchange in accordance with confidentiality law and current technology is now possible. To facilitate that process, SAMHSA recently amended the part 2 regulations to further promote the integration of confidential substance use disorder information into general health records.

They finally conclude, Mr. Speaker, by saying:

We respectfully request that the House Energy and Commerce Committee maintain the current confidentiality protections of part 2 to support individuals entering and staying in substance use disorder treatment and recovery services.

Mr. Speaker, I include in the Record this letter from these patients. Campaign To Protect Patient Privacy Rights, June 18, 2018. Re Opposition to H.R. 6082--``Overdose Prevention and Patient Safety Act''. Representative Greg Walden, Chairman of the U.S. House of Representatives Energy and Commerce Committee, Washington, DC. Representative Frank Pallone, Jr., Ranking Member of the U.S. House of Representatives Energy and Commerce Committee, Washington, DC.

Dear Chairman Walden and Ranking Member Pallone: We, the undersigned national, state, and local organizations strongly support maintaining the core protections of the federal substance use disorder patient confidentiality law (``42 U.S.C. 290dd-2'') and its regulations ``42 CFR Part 2,'' (referred to collectively as ``Part 2'') to effectively protect the confidentiality of patients' records. The Substance Abuse and Mental Health Service Administration (``SAMHSA'') recently amended Part 2's patient privacy regulations in 2017 and 2018, which accomplishes the bill's proposed objective of providing coordinated care between substance use disorder (``SUD'') and other health care information.

We remain concerned that using a weaker HIPAA Privacy Rule standard of allowing disclosures of SUD information without patient consent for treatment, payment, health care operations, or other purposes other than those currently allowed by Part 2--will contribute to the existing level of discrimination and harm to people living with substance use disorders. This will only result in more people who need substance use disorder treatment, being discouraged and afraid to seek the health care they need during the nation's worst opioid crisis.

We strongly support maintaining Part 2's current core protections for SUD information, instead of those of a weaker HIPAA Privacy standard as described in H.R. 6082 for the following reasons:

1. The heightened privacy protections in Part 2 are as critical today as they were when they were they were enacted more than 40 years ago, and must be preserved.

2. In the midst of the worst opioid epidemic in our nation's history, we must do everything possible to increase--not decrease--the number of people who seek treatment.

3. SUD is unique among medical conditions because of its criminal and civil consequences and the rampant discrimination people face.

4. With so much at stake, patients in SUD treatment should retain the right to consent when and to whom their records are disclosed, as currently found in Part 2.

5. Effective integration of SUD treatment with the rest of the health care system is critically important, and information exchange in accordance with confidentiality law and current technology is now possible. To facilitate that process, SAMHSA recently amended the Part 2 regulations to further promote the integration of confidential SUD information into general health records.

We respectfully request that the House Energy and Commerce Committee maintain the current confidentiality protections of Part 2 to support individuals entering and staying in SUD treatment and recovery services. Sincerely,

Campaign to Protect Privacy Rights: A New PATH; Addiction Haven; Addictions Resource Center, Waukesha, WI (ARC, Inc.); Advocates for Recovery Colorado; AIDS United; Alano Club of Portland; Alcohol & Addictions Resource Center, South Bend, IN; American Association for the Treatment of Opioid Dependence (AATOD); American Group Psychotherapy Association; Apricity; Arthur Schut Consulting LLC; Association of Persons Affected by Addiction; Atlantic Prevention Resources; California Consortium of Addiction Programs & Professionals (CCAPP); Capital Area Project Vox--Lansing (MI)'s Voice of Recovery; Center for Recovery and Wellness Resources; CFC Loud N Clear Foundation; Chicago Recovering Communities Coalition; Colorado Behavioral Healthcare Council; Communities for Recovery.

Community Catalyst; Connecticut Community for Addiction Recovery (CCAR); Council on Addiction Recovery Services (CAReS)-Orlean, NY; DarJune Recovery Support Services & Cafe; Davis Direction Foundation--The Zone; Daystar Center; Delphi Behavioral Health Group--Maryland House Detox; Detroit Recovery Project; The DOOR--DeKalb Open Opportunity for Recovery; Drug and Alcohol Service Providers Organization of Pennsylvania; El Paso Alliance; Faces & Voices of Recovery; Faces and Voices of Recovery (FAVOR)--Grand Strand-SC; Faces and Voices of Recovery (FAVOR)--Greenville, SC; Faces and Voices of Recovery (FAVOR)--Low Country: Charleston, SC; Faces and Voices of Recovery (FAVOR)--Mississippi Recovery Advocacy Project; Faces and Voices of Recovery (FAVOR)--Pee Dee, SC; Faces and Voices of Recovery (FAVOR)--Tri-County: Rock Hill, SC; Facing Addiction; Fellowship Foundation Recovery Community Organization.

Foundation for Recovery; Friends of Recovery--New York; Georgia Council on Substance Abuse; Greater Macomb Project Vox; Harm Reduction Coalition; Home of New Vision; HOPE for New Hampshire Recovery; Jackson Area Recovery Community-- Jackson, MI; Latah Recovery Center; Legal Action Center; Lifehouse Recovery Connection; Long Island Recovery Association (LIRA); Lotus Peer Recovery; Maine Alliance for Addiction Recovery; Massachusetts Organization for Addiction Recovery; Message Carriers of Pennsylvania; Mid-Michigan Recovery Services (NCADD Mid-Michigan Affiliate); Minnesota Recovery Connection; Missouri Recovery Network.

National Advocates for Pregnant Women; National Alliance for Medication Assisted Recovery (NAMA Recovery); National Association for Children of Addiction (NACoA); National Association of County Behavioral Health and Developmental Disability Directors (NACBHDD); National Association for Rural Mental Health (NARMH); National Center on Domestic Violence, Trauma & Mental Health; National Council on Alcoholism and Drug Dependence, Inc. (NCADD); National Council on Alcoholism and Drug Dependence--Central Mississippi Area, Inc.; National Council on Alcoholism and Drug Dependence--Maryland; National Council on Alcoholism and Drug Dependence--Phoenix; National Council on Alcoholism and Drug Dependence--San Fernando Valley; Navigating Recovery of the Lakes Region; New Jersey Association of Mental Health and Addiction Agencies; Northern Ohio Recovery Association; Oklahoma Citizen Advocates for Recovery and Transformation Association (OCARTA); Overcoming Addiction Radio, Inc.; Parent/ Professional Advocacy League; Peer Coach Academy Colorado; Pennsylvania Recovery Organizations--Alliance (PRO-A).

People Advocating Recovery (PAR); Pennsylvania Recovery Organization--Achieving Community Together (PRO-ACT); Portland Recovery Community Center; Public Justice Center; REAL--Michigan (Recovery, Education, Advocacy & Leadership); Recover Project/Western MA Training; Recover Wyoming; RecoveryATX; Recovery Alliance of Austin; Recovery Allies of West Michigan; Recovery Cafe; Recovery Communities of North Carolina; Recovery Community of Durham; Recovery Consultants of Atlanta; Recovery Epicenter Foundation, Inc.; Recovery Force of Atlantic County; Recovery is Happening; Recovery Resource Council; Recovery Organization of Support Specialist.

Revive Recovery, Inc.; Rhode Island Cares About Recovery (RICARES); Rochester Community Recovery Center; ROCovery Fitness; Safe Harbor Recovery Center; SMART Recovery (Self- Management and Recovery Training); S.O.S. Recovery Community Organization; SpiritWorks Foundation; Springs Recovery Connection; Tennessee Association of Alcohol, Drug & other Addiction Services (TAADAS); The Bridge Foundation; The Courage Center; The McShin Foundation; The Ohana Center for Recovery; The Serenity House of Flint; The Phoenix; The RASE Project; The Recovery Channel; Tia Hart Community Recovery Program.

Together Our Recovery Center Heals (T.O.R.C.H.), Inc.; Treatment Trends, Inc.; Trilogy Recovery Community; U MARC (United Mental Health and Addictions Recovery Coalition); Utah Support Advocates for Recovery Awareness (USARA); Vermont Recovery Network; Voices of Hope for Cecil County, MD; Voices of Hope Lexington; Voices of Recovery San Mateo County, CA; WAI-IAM, Inc. and RISE Recovery Community; Wisconsin Voices for Recovery; Young People in Recovery.

Mr. Speaker, I just want to say in conclusion today, that amidst the worst opioid epidemic our country has ever faced, I think it is really important that we not take any action that could result in any individual with an opiate use disorder not seeking or remaining in treatment for this life-threatening condition.

I understand the opinions on both sides, but I do think that if we don't protect the existing privacy and keep the current law with regard to privacy that we will see many individuals not seeking treatment or remaining in treatment.

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Mr. PALLONE. Mr. Speaker, I have a motion to recommit at the desk.

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Mr. PALLONE. I am opposed to H.R. 6082.

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Mr. PALLONE. Mr. Speaker, this is the final amendment to the bill which will not kill the bill or send it back to committee. If adopted, the bill will immediately proceed to final passage, as amended.

Mr. Speaker, this amendment would maintain the privacy rights provided to individuals with substance use disorder. Those patients would retain their right to determine with whom and for what purpose to share their substance use disorder treatment records from part 2 programs.

Rather than strip away patients' privacy rights, my amendment would incorporate section 509 from the bipartisan Alexander-Murray bill, S. 2680, the Opioid Crisis Response Act of 2018, that was reported out of the Senate HELP Committee on a bipartisan basis, and that was incorporated in the underlying legislation.

That provision requires the Secretary to support the development and dissemination of model training programs for substance use disorder treatment records under part 2. It would help ensure that more patients, families, and providers understand how information can be protected and shared under part 2.

My amendment would also help us to better understand the privacy needs of individuals with substance use disorder as well as how to balance those needs with the information needs of our health system to provide the highest quality care.

Specifically, my amendment would require the Secretary to conduct or support a study to better understand the patient experience with part 2 through the examination of information-sharing behaviors of individuals who obtain substance use disorder treatment at part 2 programs.

This study will provide critical insight into the central question under debate today: What is the appropriate level of privacy protections that should be applied to substance use disorder treatment records?

While there are a lot of opinions and persuasive evidence to support both sides of this debate, there is a lack of research on this issue generally or as it specifically relates to part 2. Such information will help us better understand the level of control individuals with substance use disorders need over their medical records to ensure their privacy concerns are not a barrier for such individuals accessing potentially lifesaving treatment.

It would also help us better understand what is the appropriate balance between the needs of these individuals regarding the privacy of their substance use disorder treatment information with the needs of a coordinated healthcare system to best serve its patients.

We know that today, under current law, some patients who receive substance use disorder treatment from part 2 programs choose not to share their treatment records with any provider outside of their substance use disorder treatment provider. On the other hand, there are others who choose to share with only a few of their nonsubstance use disorder treatment providers.

So I just believe it is critical we understand the reasons why such individuals have made these decisions as well as how the right to make such a decision affected their willingness to seek or remain in treatment.

This amendment is consistent with the recent recommendations from the Medicaid and CHIP Payment and Access Commission. As part of their June 2018 report to Congress, the commission stated that at this time the commission does not recommend alignment of part 2 and HIPAA. Instead, the commission recommends additional subregulatory guidance, education, and training on part 2.

As I have made clear, Mr. Speaker, I have concerns that the underlying bill would hurt our efforts to respond to the opioid epidemic and could increase the odds that fewer individuals with opiate use disorder enter and remain in treatment, a risk I believe too great to take during the worst drug abuse epidemic our country has ever faced.

However, I realize there is another side of this argument as advanced by the proponents of this bill, and we should not be concerned that this bill will affect the uptick of treatment, and, in fact, we should believe that this will only improve treatment.

Rather than undertake the 50-State experiment to see which side is right, we should support the thorough study of this issue before taking any action to weaken the privacy protections provided by part 2. In that way, we can determine the actual effect on taking away from individuals with substance use disorder the ability to decide how their treatment information is shared. That way we would have no doubt on both the intended and unintended consequences of eliminating the patient consent requirement for treatment, payment, and healthcare operation purposes as proposed by the underlying bill.

I think the stakes are too high to get this wrong. I urge my colleagues to support this amendment to increase the awareness of patients, families, and providers about how their treatment records are protected and can be shared under part 2 as well as to increase our understanding of the privacy needs of individuals with substance use disorders.

I yield back the balance of my time, Mr. Speaker.

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Mr. PALLONE. Mr. Speaker, on that I demand the yeas and nays.

The yeas and nays were ordered.

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