Illustration by Dan Kirchoff
Illustration by Dan Kirchoff
When Rockland-area resident "Nancy"'s relative was cut off from his anti-psychotic medications on December 31, it didn't come as a surprise, but nothing had prepared her for it. "Frank," a 61-year-old man had been out of work for six years due to a range of work-limiting mental health conditions including bipolar disorder, autism and chronic depression. Due to a 2002 decision by the state to take advantage of expanded Medicaid coverage for low-income childless adults, for years MaineCare, the state's Medicaid program, covered the cost of Frank's medications. That is, until the LePage administration cut around 30,000 low-income Mainers from MaineCare last year.

With only one income to support the two of them, Nancy knew she couldn't afford to pay $500 to $600 a month out-of-pocket for Frank's prescriptions. But after spending a month and a half on the phone and taking time off from work to visit Frank's doctor's office, she was getting nowhere. And her brother was getting worse.

"He was just pacing and doing the hand flapping and just coming up with some really weird thoughts," said Nancy. "He said he could feel his blood pressure go up because he was so stressed."

And the lack of progress in finding affordable drugs was also taking its toll on Nancy, who finally broke down at the local clinic.

"I started crying one day and [the clinic employee] started hugging me because I was just so frustrated and we weren't making any headway," she said. "That's when I said, 'We just can't go on like this. He can't live with me if he doesn't have his meds.'"

Finally, through the Knox County Health Clinic, Nancy was able to take advantage of a program through a drug company to purchase Frank's medication for his bipolar disorder at a reduced rate. But his depression and anti-anxiety drugs were harder to get. For six months, he was able to get them through Walmart at $10 a month until the coupons ran out. Fortunately, in August, Nancy learned of another pharmacy club at Shaw's, which allowed her to purchase Frank's second medication at a nominal fee.

In the meantime, she is helping Frank apply for federal disability benefits for the second time in the hopes he will be able to qualify for medical coverage. But if there's an emergency, such as when Frank recently shut his hand in a car door, Nancy says she doesn't know how they'll pay the expenses.

"I'm going, 'Oh my God, here we go to the ER with no insurance or MaineCare,'" she said. "Every time something like that happens it's so scary."

Struggling to Get Treatment and Medications

Maine is currently the only state in New England, and one of 23 states nationwide, that has refused to accept federal dollars to expand Medicaid for low-income people like Frank. Under the ACA, the federal government will pay 100 percent of the costs of Medicaid expansion for approximately 70,000 low-income Mainers for three years, before dropping the reimbursement down to 90 percent. In their opposition to expansion, Governor LePage and nearly all of the Legislature's Republicans say that it will lead to increased costs down the road and crowd out funding for other programs.

Leading Medicaid expansion opponent Rep. Deb Sanderson (R-Chelsea) argues that uninsured patients who would ordinarily qualify for Medicaid expansion should purchase private subsidized insurance from the ACA's Health Insurance Marketplace. For those like Frank who are too poor to qualify for subsidies, Republicans urge patients to rely on health clinics for the poor or hospital charity care, which offer sliding fee scales for low-income, uninsured people.

"This debate is not about access to health care ... everyone has access," said Sanderson last March. 

Mental health and substance abuse advocates disagree. Although around 2.65 million people with mental illnesses were meant to qualify for subsidies to buy private insurance under the Affordable Care Act, Medicaid is still the most important mental health delivery program, financing 27 percent of all mental health services, according to the National Alliance on Mental Illness (NAMI).

NAMI Maine Executive Director Jenna Mehnert says the most common call into her organization's help line is from people without health insurance who are seeking access to treatment or medications.
"We had a whole bunch of folks who, when they lost their MaineCare last winter, were told to taper their medicine," said Mehnert. "So they might be taking some really serious anti-psychotic medications and they're getting doctors who say, instead of taking it twice a day, go to once a day then go to every other day because there is simply no way for them to get their medications."

At the Knox County Health Clinic, a free community clinic in Rockland staffed with volunteers, Executive Director Meredith Batley says the ACA has helped many of the clinic's patients gain access to health care, but many have not been so lucky.

"Some of the people who make over $12,000 a year did qualify for an appropriate plan, but for a lot of people who are making minimum wage or are self-employed making less than that, there was absolutely nothing for them," said Batley. "There's that big gap in care."

Batley says one of the biggest challenges is helping poor patients find affordable prescription drugs. Since 2003, the clinic has reportedly helped patients purchase over $1 million worth of medications through reduced-rate drug programs offered by pharmaceutical companies. However, some programs require much lower income thresholds than some of the clinic's patients earn and some medications simply aren't on the list, such as asthma medications.

"There are certain medications that are just very difficult to afford or to find a free program for, so [patients] are kind of stuck in the middle," said Batley.

Unlike buying directly from a pharmacy, programs through the pharmaceutical companies can take weeks to arrive. And the clinic, which is funded solely by local donations, is only open once a week.

"We're only just able to meet some of the need," said Batley. "We know there's a lot more people out there who could benefit from this program if it was open more frequently."

Access to Substance Abuse Treatment Has Been Devastated

Advocates say one of the biggest gaps in coverage is for patients with substance abuse problems.

"The decision not to accept the MaineCare expansion has devastated the field of substance abuse more than any decision I have ever seen and I have been in this field a long time," said Pat Kimball, president of the Maine Association of Substance Abuse Providers.

Kimball, who is also the executive director of Wellspring Mental Health and Substance Abuse Services in Bangor, says that some of the agency's clients qualify for MaineCare or Medicare under federal disability laws if they can prove they have a debilitating disability, but many do not qualify. She said 95 percent of Wellspring's patients have a "co-occurring disorder" involving both mental illness and substance abuse. She said her typical clients are males in their 30s, who often have an addiction and served a jail sentence.

"They may have some skills for a job, but because they're so physically ill they currently can't work a job, but they're not considered disabled," said Kimball. "The hope and the goal is if you get them into a program similar to ours, you get them physically healthy, you teach them about their illness, they learn how to work a support system. You help them find a job and a safe place to live and their recovery starts. That's the goal, but when they have no means to pay for it, then they end up in shelters and ERs and they end up in morgues. That's the situation we've created."

As a result of the cuts in MaineCare made last year and the state's refusal to accept Medicaid expansion money, Kimball says Wellspring has ended up with 39 women on the wait list for treatment at the agency's women's house and 40 on the waiting list for the men's house.

"As an agency, I can only take so many. I can't fill my beds with people who have no health care coverage," said Kimball. "So, the state's decision to not accept the expansion is crippling our program."

Because they have no insurance coverage, Kimball said that even if the agency is able to take them in, they still can't afford medication or pay for health care.

"But if they can learn to manage their illness and get into recovery, they can be a very active member of the community, working, paying taxes, serving on your committees and all sorts of things," said Kimball. "But first, they deserve to get healthy."