By Alison Knopf
Perhaps the best example of what can happen to loss of confidentiality is the story of the Boston Medical Center nurse, who, doing exactly what the Surgeon General of the United States recommended, got a prescription for naloxone in case she needed to rescue anyone from an opioid overdose. She was denied life insurance, because the insurance company thought she herself was at risk of overdosing (https://www.npr.org/sections/health-shots/2018/12/13/674586548/nurse-denied-life-insurance-because-she-carries-naloxone).
In fact, life insurance is one thing that is not protected under the Americans with Disabilities Act—you can be denied it if you have a history of addiction, just as you can be denied (or charged higher rates) if you have a dangerous occupation or hobby. But there was only one thing operating here: stigma.
“In this case, it was the stigma that was driving the discrimination,” said H. Westley Clark, MD, JD, in an interview with AT Forum. “She did not have a substance use disorder problem.”
“All you have to do is map out the logic,” said Dr. Clark, who is Dean’s Executive Professor at Santa Clara University, and former director of the Center for Substance Abuse Treatment at the Substance Abuse and Mental Health Services Administration (SAMHSA). Information about prescriptions is in medical records, easy to get, and everyone, from banks to employers to credit card companies, wants to get it.
“We know that when we open that door, as the message starts to disseminate, people will become reluctant to engage in treatment,” said Dr. Clark. “We no longer have the ‘what ifs.’”
Bill Stauffer, CADC, CCS, LSW, executive director of the Pennsylvania Recovery Organizations—Alliance, and a co-Chair of the public policy committee of Faces & Voices of Recovery, agreed.
One of the strangest parts of the story is the people and organizations who want to get rid of the regulation: the American Society of Addiction Medicine, the National Association for Behavioral Health (which counts many large OTPs as members), and the National Association of Addiction Treatment Providers, to name a few. These are the groups that treat people with substance use disorders (SUDs)—one would think they would want their patients to be able to trust them. “I don’t think they fully understand the impact” taking away confidentiality would have on their business, said Mr. Stauffer.
“Someone goes to Hazelden Betty Ford, and gets their rights violated, the patient will end up on the treatment facility doorstep to figure out who violated their rights,” he said.
In fact, it’s that fear—of being sued when a job is lost or custody of a child is lost due to SUD treatment records—that made NAADAC, the Association for Addiction Professionals (NAADAC)—drop out of the coalition to amend 42 CFR Part 2.
“It won’t take long before people start realizing these are adversarial relationships,” said Dr. Clark, referring to patients and treatment providers. One reason providers won’t do Screening and Brief Intervention and Referral to Treatment (SBIRT) is that they are worried about liability, said Dr. Clark—and this is primary care providers, who aren’t even subject to 42 CFR Part 2 (it applies only to treatment providers who put themselves forward as treating SUDs and who accept federal funding, including Medicaid or Medicare).
There is only one small piece left, really, of 42 CFR Part 2—it’s the piece that requires the patient to give consent about who gets his or her patient information. All the patient is saying is, “Let me participate in that decision,” said Dr. Clark.
But electronic health records (EHRs) have become currency. Because of 42 CFR Part 2, they don’t include treatment for SUDs. This annoys the entire system of hospitals and insurance companies. “Think of the value that would have for an employer who didn’t want to hire people who were at high risk for having a SUD,” said Mr. Stauffer, who is in recovery and frequently cites the first question he asked his doctor upon seeking help: “Will this be confidential?”
When SAMHSA changed the regulation a year ago to allow release of information for the purpose of the vaguely phrased “health care operations,” a chink in the door was opened. “This information is lucrative,” said Mr. Stauffer. “How would we ever know what the healthcare operations vendors do with the information? What keeps them from selling information that can eventually be re-associated with the patient?”
There is also the personal concern about getting pain medication—difficult enough for people without an addiction history these days. “Medical discrimination against people with SUDs is common,” he added. “My doctor knows I’m in recovery. I had a dental problem one time, I needed antibiotics and a painkiller at 2:00 in the morning. I got the medication I needed, so that I could stabilize it and see a dentist, I was able to make that judgment. But if my record has addict written on the front of it, they’re going to say, ‘No you’re drug seeking,’ and I’m going to be in agony.”
What’s happening in Congress? Well, the House Energy and Commerce Committee, which held many hearings focused on getting rid of 42 CFR Part 2 under Republican leadership, is now headed by Rep. Frank Pallone (D-New Jersey), whose questions in past hearings clearly showed he is on the side of protecting the regulation. “In the previous Congress, he was a champion for patient confidentiality rights as Minority Leader of the Energy and Commerce Committee,” noted Deborah A. Reid, senior health policy attorney with the Legal Action Center. “This supported the advocacy efforts of other key stakeholders, such as Faces & Voices of Recovery and the AMA,” she told AT Forum, adding that “the Legal Action Center remains committed to working closely with advocates to educate the new Congress about the importance of maintaining strong confidentiality protections for SUD patients.”
However, Mr. Stauffer, who watches these things closely (he told us around Christmas that he would not rest until 11:59 December 31 when the lame-duck Congress would have to give up its plot to get rid of 42 CFR Part 2) said that the starting point for this new session will likely be where the last session left off. “They were looking to create a huge new loophole which would allow the release of information for all kinds of reasons—civil, administrative—that to me is the same as losing consent.”
“We have to have a larger discussion about privacy in America,” said Mr. Stauffer.
The nail in the coffin of last year’s attempt to gut the regulation was the American Medical Association (AMA), which, in a dramatic last-minute letter to Congressional leadership, warned that such an action would deter patients from seeking treatment. The AMA told us that they had someone at the table during the last weeks of December as efforts were made to get rid of 42 CFR Part 2, and they’re continuing to watch the situation.
Perhaps the bigger target now is the Affordable Care Act (ACA), because, certainly in the Senate, this is still under fire. “We need to hold the fort, because the ACA is very fragile,” said Dr. Clark. The decision last year from a Texas judge—which has been challenged by most state attorneys general, and will head to the Supreme Court—that the ACA is not constitutional, has caused great concerns among the treatment field.
Meanwhile, the stalwart defender of 42 CFR Part 2 is the American Association for the Treatment of Opioid Dependence (AATOD). President Mark Parrino, MPA, told AT Forum that ultimately, he and Mark Covall, who heads the National Association for Behavioral Health, “had to agree to disagree.”
However, Mr. Parrino did also talk with the CEOs of the large OTP systems, some of whom belong to Mr. Covall’s group, as well as with AATOD, and they do not support converting 42 CFR Part 2 to a much weaker regulation, HIPAA. “In effect, they are members of AATOD and NABH, but do not necessarily agree with a HIPAA conversion,” Mr. Parrino told AT Forum. “They may stay silent on the topic, but I have not read of a public disagreement with AATOD’s position.”
And AATOD’s position has been consistent. “I understand the financial and record-keeping reasons why groups support the conversion to HIPAA,” said Mr. Parrino, ever the diplomat. “In my judgment, they are not aware of the impact that this will have on patients,” he said. “This also explains why Faces and Voices of Recovery and NAMA Recovery are so worried.”
Some policy-making groups are of the judgment that 42 CFR Part 2 is burdensome and an impediment to service integration and more rapid claims processing—something that insurance companies and EHRs may believe. But it’s not easy to understand that from a clinical viewpoint when helping patients with SUDs.
“The AMA’s support has been critically important in this policy debate, but I do not think this matter is resolved,” said Mr. Parrino. “I am acutely aware of how patients feel about preserving their right to confidential treatment, having spent 18 years of my professional life working in an OTP in New York.”
During the process of being admitted to treatment, patients are not focused on the value of confidentiality, because they are in a time of crisis, said Mr. Parrino. But the confidentiality protections took on greater importance for them when they became stabilized, got jobs, and had children. “At that point, preserving confidentiality was critical,” said Mr. Parrino. “There were a number of patients who could not get health insurance, disability insurance, or life insurance, once it became known that they were in treatment. I do not think that has changed.”
Finally, patients are also attuned to “how others would engage them in and out of health care once they revealed that they were in a methadone treatment program,” said Mr. Parrino. “It is of great interest to me that these views seem to be in the minority at the present time against the backdrop of the opioid epidemic.”
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