Kerry Ann Sheehan

Kerry Ann Sheehan of Fitchburg, Massachusetts, will lose access to some of the specialized care team she’s built over time to treat her Ehlers-Danlos syndrome (EDS) and related conditions.

Major changes to MassHealth, Massachusetts’ Medicaid program, went into effect on March 1.

As a MassHealth user, I was informed in December that they would no longer be partnering with the private insurer Neighborhood Health Plan, which covered the bulk of my health insurance claims.

Instead, I was being automatically enrolled in an Accountable Care Organization (ACO), which is a specific group of primary care doctors, hospitals, and specialists who come together to coordinate a patient’s healthcare.

Under this model, primary care doctors are responsible for streamlining care and containing patients’ health costs. My former primary care provider was reassigned to be my pillar of care.

I began to panic.

As someone with multiple disorders, including Ehlers-Danlos syndrome (EDS), severe endometriosis, and extensive degenerative damage in my spine and hips, I need flexibility to see the specialists who can best serve me.

I had recently left my primary care provider after nearly eight years because, as my health continued to deteriorate, they were no longer able to give me the treatment I needed.

After some research, I finally found a primary care doctor who was supportive and compassionate about my complex health needs in early December.

But now, MassHealth’s revamped model puts this positive new path in my healthcare journey in jeopardy.

There are now 17 authorized ACOs in the state. Primary care doctors are limited to joining one ACO, but specialists can join many. But that doesn’t mean every specialist will remain available in-network.

Many specialists that treat me under the Neighborhood Health Plan insurance do not take MassHealth as insurance.

As a result, I still risk losing access to many members of my healthcare team, whom I’ve spent years finding and developing relationships with.

Sheehan is confined to a wheelchair until she can get the proper post-surgery care, which is no longer approved for coverage as of March 1. “I’m terrified about what all of these [changes] will cost my health,” she told Healthline.

Changes will affect a majority of MassHealth patients

I am far from alone in this situation. In fact, approximately 1.2 of the 1.8 million people on MassHealth will be affected by the March 1 changes to the program.

Of these, about 800,000 to 850,000 will be assigned into ACOs.

One of those individuals experiencing drastic changes to her MassHealth plan is 33-year-old Kerry Ann Sheehan of Fitchburg, Massachusetts.

Like me, Sheehan previously had Neighborhood Health Plan and is an EDS patient. She also has correlated diseases including syringomyelia (which is the formation of cysts in the spinal cord that can compress nerves and limit mobility) and tethered spinal cord syndrome. In addition, she has gastroparesis, which requires her to use IV nutrition.

Sheehan’s biggest challenge has been getting approval to see specialists who are not in Massachusetts.

“I have a lot of out-of-state specialists because I’ve gotten care denied so much in this state, [with doctors] either saying they can’t help me or don’t know how to help me,” Sheehan told Healthline.

Sheehan had surgery last May to release her tethered cord and needs to see a physical therapist who specializes in rehabilitation from such a surgery, but could not find one in Massachusetts.

Instead, she needs to travel to Rhode Island, which required many appeals to her health insurance to receive approval of her medical claim.

“I’m finally in a place I fought long and hard for, as I won two appeals to see a specialist physical therapist,” said Sheehan. Now, she’ll only get to complete a small portion of her physical therapy.

Sheehan, who is on Social Security Disability for her conditions, is now confined to a wheelchair until she can get the proper aftercare for her surgery.

Her concern is that her new plan will be even more restrictive about which specialists she can see and require her to stay in-state for all of her medical care — even if the right specialists are not available.

Fortunately, Sheehan was recently approved for Medicare, which will go into effect in October. She hopes it will offer her more flexibility to build a team of specialists.

But she is worried about how the disruption in her coverage from now until October will affect her health.

“It’s already a full-time job just dealing with my health insurance,” says Sheehan. “I’m terrified about what all of these [changes] will cost my health.”

Breaking up healthcare teams hits people with chronic conditions hard

Fifty-eight-year-old Nancy Houghton of Beverly, Massachusetts, has similar concerns as Sheehan.

Houghton suffers from nearly a dozen diseases, including most prominently pulmonary fibrosis and rheumatoid arthritis (RA).

Being placed into an ACO requires Houghton to make a catch-22-like choice between keeping her primary care doctor and her specialists who treat her pulmonary fibrosis and RA.

“I’m damned no matter what choice I make,” Houghton said.

A MassHealth patient for more than two decades, Houghton has a very well-established relationship with her healthcare team.

The specialists she sees for her pulmonary fibrosis are the top experts in their field and specialize in treating her type of the disease, which is secondary to (a result of) her RA.

On the other hand, her primary care doctor, who is at a different hospital, has been extremely supportive of her health needs and has a great professional rapport with her specialists.

Houghton, who is being placed in an ACO plan that will not cover her specialists, is adamant that breaking up her healthcare team could risk her life.

Houghton was told by MassHealth she’d get a callback, but as of this writing, she still has not.

Unclear how much money new system will save

The primary goal of the changes to MassHealth is to make the program more cost efficient.

Massachusetts is implementing these changes as part of a 2016 Medicaid overhaul agreement with the federal government, which promised $1.8 billion in additional funding.

But despite many assertions that the new MassHealth model will cost less, actual research on ACOs indicates that they reap limited healthcare savings long-term.

“The MassHealth ACO program is an opportunity to improve coordination and quality of care for some of the most vulnerable Massachusetts residents,” says Suzanne Curry, Associate Director, Policy and Government Relations of the healthcare advocacy group, Health Care for All.

“However, this is a substantial change in the MassHealth program and will require extensive outreach and support to members to ensure that they can maintain continuity of care with current providers and really benefit from these…reforms.”

The Republican reported that “several people in the health care industry said while they support the idea [of ACOs] they fear a difficult transition.”

Anecdotal evidence from patients with chronic conditions suggests that navigating these changes and negotiating the best outcomes may take more resources then MassHealth had planned on.

And it looks like the shift to adopt an ACO-model of healthcare management for MassHealth is only the beginning of intended reforms to the state’s Medicaid program, with potentially large consequences for lower income people with chronic health conditions.

MassHealth did not respond to repeated requests for an interview.