Chronic pain patient becomes advocate for health care reforms – PGH City Paper

click to enlarge

Photo: Jenifer Morris Photography

We the Patients Fly-In on Capitol Hill

When Tami Seretti wakes up each morning, she never knows quite how long it will take to get out of bed.

Some days, after 40 minutes of gentle stretching, she can ease herself onto her feet and meet the day ahead. On bad days, it can be longer.

“I’ve gone from doing mud runs and obstacle courses to sitting on the couch most of the day,” she says.

Seretti’s health struggles began in 1996 when she started to develop patches on her skin, which were diagnosed several months later as psoriasis plaques. For the next 12 years, she battled through, trying to make the best of a rare condition that caused daily pain and altered her appearance.

But by 2008, the immune cells that had been attacking her skin suddenly turned on her joints. She had developed psoriatic arthritis, a secondary complication of her primary disease that affects about one-third of all psoriasis patients. Similar to rheumatoid arthritis, PsA patients experience pain, swelling, and stiffness in the joints that worsen over time.

Within a few more years, Seretti was registered disabled. For someone still decades from retirement age, the forced withdrawal from work and recreation was crushing.

“Emotionally, mentally, physically,” she says. “It’s just an exhausting, debilitating, frustrating experience all around.”

Through her years of discouragement, Seretti says she’s found purpose in advocating for changes in health care laws that could improve the quality of life for herself and other chronic disease patients.

Last week, Seretti, of Center Township in Beaver County, joined about 50 other patient advocates from across the country who traveled to Washington, D.C. to discuss policy proposals with policymakers and push for change. The group, led by Patients Rising Now, focused on two congressional bills that speak to issues Seretti has faced in her own journey.

“She has a story that is compelling for both of those bills,” Terry Wilcox, Patients Rising Now executive director, told Pittsburgh City Paper.

The Safe Step Act and the HELP Copays Act have both sat in congressional committees since last year. Although they’ve garnered some bipartisan support, without more backing, they could flounder in committee along with the majority of congressional bills. 

“This is kind of like a carousel that we’re stuck on,” Seretti says. “I’ve been trying to get cosponsors for the Safe Step Act for six years now.”

She says it is slowly moving forward, but that there are “ just so many things that get in the way … There’s always something going on that takes precedence.” 

If passed, the Safe Step Act would allow some patients to bypass step-therapy procedures, a process where insurance companies require patients to start out with the cheapest available treatment before moving on to more expensive options only when they’ve been proven ineffective.

Seretti blames this process for the long years it took to get on the right treatment plan, and believes her arthritis would never have progressed to its present extent if she’d begun her current regimen earlier on.

“Just calling up my insurance company and trying to get my medicine is a full-time job.”

tweet this

While it won’t alter her situation now, she hopes to see the bill passed so others can avoid her fate.

“Access to care affects everyone, whether they know it or not,” she says.

Enduring the step-therapy process for two decades, Seretti only recently landed on a medication option that brings real relief. But, in the past three years, her monthly copays have risen from $35 to $1,500.

“Now I found something that works for me, and I’m having access issues and affordability issues,” she says.

A co-pay assistance program offered by the pharmacy brings her payments down, but it maxes out at $9,000 for the year, the cost of approximately six monthly refills. If she was paying this out of pocket, she would reach her annual deductible, but her plan uses a co-pay adjustment program that discounts the pharmacy’s contributions.

Her insurance provider tells her they’ve found a workaround through a secondary assistance plan, but she’s gearing up for the worst for her next monthly bill.

 “I don’t have much confidence because none of this makes sense to me,” she says. “Just calling …….


Related Posts


New ‘digital masks’ touted as means of protecting patient privacy – Healthcare Finance News

Photo: Al David Sacks/Getty Images

Technologists writing in the journal Nature have created a digital “mask,” dubbed the DM, which they say offers a pragmatic approach to safeguarding patient privacy in electronic health records and during virtual healthcare visits.

There appear to be clinical benefits to the DM as well.

The technology is based on real-time 3D reconstructio…….


State Rules Stymie Patient Access to Care at Opioid Treatment Centers –

Checking if the site connection is secure

Enable JavaScript and cookies to continue



Top Ranked for Quality & Patient Safety – NYU Langone Health

NYU Langone Health has the highest quality of care and patient safety rankings of any healthcare organization in the country. Each day, we ensure that we are delivering the best in all aspects of care across our hospitals and health system. Our exceptional quality and safety standards have made us the top-rated healthcare system in the New York City area and placed us among the top-ranked …….


COVID-19 rehabilitation patient leaflet hugely popular – World Health Organization

Recognizing early that rehabilitation would be essential for many in their recovery from COVID-19 infection, WHO/Europe quickly convened experts and people recovering from COVID-19 to produce the patient leaflet ‘Support for rehabilitation: self-management after COVID-19-related illness’. 

The resource provides evidence-based support and advice for adults who are recovering from COVI…….


Uninsured, Publicly Insured Patients Face Implicit Bias in Health –

Checking if the site connection is secure

Enable JavaScript and cookies to continue



AI Brings New Opportunities for Patient Financial Navigation – Managed Healthcare Executive

The confusing, data-intensive world of getting help with medical bills has become a fertile territory for software developers.

When patients need help paying for high-cost medical treatment, they face a good news/bad news scenario.

The good news is that drugmakers, private foundations, government agencies and others have myriad programs that can help many if not all. The bad: Actual…….

Leave a Reply

Your email address will not be published. Required fields are marked *