After Her Loss, Claysburg Woman Fighting to Change Health Info Law

Editor's Note: This story featuring Peggy Miller of Claysburg initially appeared in the July 26, 2018, edition of the Morrisons Cove Herald. This is a follow-up story to "A Mother's Grief," which appeared on the Herald's website on April 11, 2019. Peggy Miller is fighting to get a portion of the HIPPA law changed that will allow families to have input into the treatment of adult family members suffering from addiction.

Peggy Miller of Claysburg did everything she could to save her two daughters. She begged, pleaded and even turned one into the police in an effort to get them help.

The harder she tried, the more resistance she got, not only from her daughters, but from the people whose job it is to help those struggling with addiction, she said.

"Every time I sought help, every time I sought information, I got a hand in my face," Peggy said.

Both daughters, Marlene "Moe" Holland and Erma "Missy" Childers, died from drug overdoses while Peggy fought in vain to get them the help they needed.

Moe died in 2004 at the age of 31, and Missy passed away in 2016 at 40. Both were adults, and both were protected under the Health Insurance Portability and Accountability Act (HIPPA).

HIPPA, which was designed to provide security provisions for safeguarding an individual's medical information, was signed into law by President Bill Clinton in 1996.

While HIPPA is effective in ensuring that an individual's personal medical history and records cannot be obtained by anyone without consent, there is an unintended consequence, one that Peggy said is leading to people's deaths.

"Nobody would talk to me," Peggy said. "Every time I tried to talk to a doctor or a counselor, I was told they couldn't talk to me because they [her daughters] were adults."

Unheard Pleas

When Moe was battling her addiction, Peggy said she had done everything she could. Peggy said that she turned her daughter into the police for driving without a license, hoping they would lock her up.

"If she was locked up, she wouldn't be using," Peggy said.

Peggy said she went to Blair County Drug and Alcohol seeking help, only to be told there was nothing they could do based on what Peggy was saying,

"I got a hand in my face," she said. "They told me we can't talk to you about her because of HIPPA."

Peggy said she went to the crisis center at UPMC Altoona and was told there was nothing she could do to help her daughter unless the daughter asked for help, because she was over the age of 18.

"I spent many nights awake crying and praying, looking for ways to help. There was nothing I could do because she was over 18," Peggy said.

When Peggy's daughter Missy was abusing Xanax, she desperately tried to talk to Missy's doctor to inform him that she was taking too many of the pills.

"They wouldn't talk to me," Peggy said. "They just said 'HIPPA.'"

When Missy overdosed and was in the emergency room at UPMC Altoona getting her stomach pumped, Peggy went up to the crisis center to tell them that her daughter had overdosed on the very pills they had given her. Again, she was turned away.

"They wouldn't even hear me out," Peggy said. "I got a hand in my face and told 'HIPPA.'"

Missy was discharged from the hospital a few days later with a prescription for the pills she was abusing – the ones that would eventually kill her.

Peggy said that had someone listened to her when she tried to tell them that her daughter was abusing the pills, maybe things would have turned out different.

"My daughter was an addict. She wasn't going to tell them she was abusing [pills], so why wouldn't they listen to me?" Peggy asked.

After watching helplessly as drugs took the lives of two of her daughters, Peggy made it a mission to change the HIPPA law to allow the families of those who are battling addiction or mental illness input into their treatment.

Peggy said that she doesn't want to change the privacy law, but she wants families to have some control over the care of adult members who may not be able to make the best decisions for themselves.

"An addict is not going to tell a doctor they are taking too many pills," Peggy said. "But why can't that person's mother tell the doctor that? It may save their life."

Seeking Help

Peggy has reached out to Pennsylvania Gov. Tom Wolf along with State Rep. Judy Ward and Jim Gregory, the Republican nominee for the 80th District State House seat.

While she is waiting to hear back from the governor's office, Peggy has met with Ward and Gregory.

Gregory said the first step to fixing a problem is to recognize there is a problem, and Peggy's story is an example of an issue that exists that needs fixed.

"This is a very important issue but it's not one that people would readily recognize because it's just not something you think of," he said. "That's why it's important for her to come out and tell her story, to shine a light on another aspect of the problem that you don't normally think of."

Gregory said this is an unintended consequence of HIPPA, and that Peggy's story presents in vivid, painful detail how just a simple thing of trying to protect somebody's privacy is actually causing death.

"We need to acknowledge that HIPPA is creating a problem for the addict and their families and we need to figure out how to address that," he said.

Gregory said that as far as physicians are concerned, there are no gray areas with HIPPA. It is black and white, and that is what Peggy ran into. There was no room under the current HIPPA law for a doctor to hear a single word Peggy had to say about what she saw happening to her daughters.

"HIPPA was designed to provide privacy, and when you create rules, and policies and laws, you have intended consequences and you have unintended consequences. The unintended consequence that has been created here is that we have people who can't take care of themselves being protected by something that is supposed to protect them. But it's not protecting them, it's killing them," Gregory said.

Ward said that because HIPPA is a federal law, any changes to it has to come from the federal level, but that doesn't mean they can't look into some things at the state level to try to help.

"It will take some out-of-the-box thinking, it's not an easy fix," she said.

Ward said the idea of families having input into treatment in certain situations makes sense and that they could be a valuable resource to physicians.

"It would be better if counselors and physicians got the whole picture," she said. "People who are having a mental health crisis or a drug problem are not thinking clearly a lot of times. That is when family input would be extremely valuable."

Ward said there has to be a way to find some middle ground when it comes to family involvement.

"Even if it's just the input of information, they should be able to talk to families and listen to what they say. There might be better treatment outcomes," she said.

Peggy said she is taking on this fight because she doesn't want anyone to have to experience the pain of watching a loved one die while they stand helplessly by, unable to help because of the HIPPA law.

"I am trying to get HIPPA changed so we can get our adult children into treatment. So they stop killing themselves. Right now we have no rights because they are over 18. Well, you don't stop being a parent just because your kid turns 18," she said.