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Every year, innovations come to market that can provide substantial relief to patients with serious chronic conditions. As they do, managed care professionals grapple with hard decisions about triaging conditions, establishing which treatments to include in formularies, and defining the circumstances under which a patient should be covered.
In the documentary film INNER-STATE, three people with three kinds of immune-mediated inflammatory disorders — Crohn’s disease, rheumatoid arthritis (RA), and psoriasis — give a broader perspective into the many different factors that go into a treatment decision. They bring the statistics to life by sharing their journeys from onset to diagnosis to treatment, through years of debilitating illness and struggle. In each story, the far-reaching impact of these conditions is a common thread. The people who are featured in the film suffer from several related physical and psychological injuries, while their families deal with substantial emotional and economic strain. Communities are robbed of these patients’ valuable contributions to schools, organizations, and the workforce.
Centocor, with support from groups like the National Psoriasis Foundation, has been screening the film across the country to help educate patients, their families, and the general public. Another group stands to benefit from being in the audience as well: managed care professionals. By watching patient stories unfold in such detail — the debilitating long-term impact, the related conditions and stresses, the struggles to get coverage and access to treatment — payers can learn more about conditions for which they may have limited familiarity. This may lead to a better understanding of how to identify appropriate individuals for treatment and which biologics to include on formularies.
Biologics, which have emerged as options for patients with immune-mediated inflammatory disorders, are not new to the market. Many have been around for a decade. However, they are painstaking to manufacture. Development of these drugs involves the use of live cultures — a single bottle can take nine months to produce.
According to Michael Parks, vice president of communications at Centocor, the effort to educate physicians, employee benefit consultants, and managed care professionals about all of the factors that affect a treatment decision — for instance, the desire of a patient with Crohn’s disease to avoid surgery that removes part of the intestine — can help them make optimal decisions for patients.
“We heard from decision makers that the film helped them learn more about the whole patient and the impact on families,” says Parks. “Psoriasis, for example, is still inaccurately viewed by some as only a cosmetic condition. Many people also might not know that early treatment of RA is pivotal to preventing escalation of the disease. For many patients who experience such long and painful journeys, biologics represent their best hope for success.”
Ray, a loving father and race car driver, was sidetracked for years by Crohn’s disease. Jason, now a restaurant manager, has suffered from psoriasis since age 6. Janie has struggled with RA from a young age. Today, when she’s able to manage her disease with biologics, she can pursue her college education and a career as a musician.
In INNERSTATE, these three real-life stars share their stories. The documentary, produced by the Creative Group and directed by Chris Valentino, is the first of its kind for the industry — direct outreach through screenings to the public and to such groups as the medical directors at the National Academy of Managed Care Physicians.
“The feedback from the medical directors was very positive. They appreciated getting the full story the film provided,” says Parks. Each story conveys the broad-ranging and debilitating impact of immune-mediated inflammatory disorders and the struggle for the right diagnosis and treatment.
Janie’s condition “popped out of nowhere” when her leg became dislocated while watching television. The family physician ran blood work. Two weeks later, Janie was rushed to the emergency room in the first of many excruciating episodes. “My whole body felt like someone was stabbing me,” she remembers. RA affects 2.5 million Americans like Janie.
Half a million Americans suffer from Crohn’s disease. The illness left Ray bedridden for months, unable to work or play with his children. The severity of his condition brought with it infections and a loss of 110 pounds. As doctors struggled for a year to find an accurate diagnosis, Ray was unable to hold a job and could barely leave his house.
As one of the 5.8 to 7.5 million Americans with psoriasis (NPF 2007, citing NIH statistics), Jason has endured numerous treatments since childhood, including lying for hours in a bathtub of tar. Adding to this discomfort and frustration: the significant psychological, social, and economic effects of living with such a condition in a world that often judges people on external appearances.
In the film, Jason remembers a childhood trip to a public pool. The other swimmers left the pool upon seeing his psoriasis-ravaged skin. As a teen, he began pursuing a dream of working in the hospitality industry with a job at a fast-food restaurant. One day, dressed in a short-sleeved shirt in the summer heat, he presented meals to waiting customers, who refused to accept the food because of his psoriasis.
“It may not kill you physically, but it will kill you mentally,” he says.
All three people whose stories are told in INNERSTATE have experienced success with biologics. Janie says she felt like a “whole new person.” Today, she attends college, is pursuing a musical career, and is a part-time nanny for three active kids.
In times before she was able to fill her daily schedule, Janie experienced “the frustration of finding something that works.” She recalled the enormous effort to find an accurate diagnosis: “For some, a real diagnosis can take forever,” she says. Her journey also included steroids, which, if taken long term, can lead to the risk of bone deterioration and other problems.
For Ray, the process also has been frustrating and painful. “I struggled to find some treatment that worked for me,” he remembers. A few drugs gave him some relief, but “I was never comfortable or confident enough to go out and do anything,” he says. Constantly exhausted, he tried to race but could not finish, and often needed one to two days to recover. “My race cars sat under covers,” he says.
Since being on biologics, Ray’s flare-ups have decreased significantly. He’s been able to resume racing, and is signed up for four national events this year. He also has been able to participate more in the lives of his two sons, including riding Motocross with the oldest. “I stay pretty active with him, to make up for the time I’ve lost,” he says.
Jason’s skin is now clearer than it has been since early childhood. He’s been comfortably going swimming without a shirt for the first time since age 6, and pursues a management career in the hospitality industry — two things that would have been nearly impossible with his psoriasis in full flare-up. Psychologically, biologics have opened up a new universe for him: He can now face the world with confidence.
Identifying the right treatment is the first step toward outcomes like these. Patients also must be able to gain access to that treatment on a regular basis. That is where many have the most difficulty.
In the very beginning, Ray didn’t have health insurance, but a generous doctor came to his aid. “He didn’t care if I had insurance or a dollar in my pocket. He was filling out medical assistance forms. He knew how the medical system worked and got me health insurance through the state. I’m very fortunate.”
Janie is covered under her parents’ insurance. “We work with the insurance company to make sure our paperwork is covered,” she says. After she finishes college, she will take responsibility for her own insurance coverage as an adult.
For Jason, the self-sacrifice of his parents really made the difference. His father used money saved for a new pickup to pay for Jason’s childhood treatments. Today Jason benefits from “a great insurance plan” with his corporate employer. This is good because with his type of biologic therapy, treatment at regular eight-week intervals is crucial.
Stories like those told in INNER-STATE give valuable details about living with a chronic condition like an immune system disorder — a crucial step in helping the right drugs get to the right people.
“Crohn’s is a disease that not everyone knows about because of the type of illness it is,” says Ray. “People are embarrassed about it.” Adds Janie, “If everyone knew about these illnesses, it wouldn’t be so difficult.”
According to Gail Zimmerman, president and CEO of the National Psoriasis Foundation, “Psoriasis and psoriatic arthritis are chronic, potentially disabling diseases that are often misunderstood.” A 2001 benchmark survey conducted by the organization reported that almost 60 percent of respondents cited their disease to be a large problem in their everyday life (NPF 2001). Moreover, the psychological impact, which is particularly marked in younger patients and women, can be debilitating. A study conducted at the University of Western Ontario, in London, Ont., assessed patients who suffered from acne, hair loss, eczema, or psoriasis for depression; the highest levels of depression were found among those with severe psoriasis (Gupta 1998).
“You have to take into account quality of life,” Jason says.
Indeed, the impact of such chronic conditions often extends far beyond the primary ailment. According to Janie, patients with RA are at greater risk for heart disease and disability, have a shortened life expectancy, and have to deal with mobility issues and pain management. Crohn’s disease brings with it a myriad of related and severe conditions: infections, organ damage, increased risk of cancer, nutritional issues, unhealthy weight loss, and depression.
Many patients with primary chronic conditions like these and their comorbidities do not have the positive resolutions that Janie, Jason, and Ray are experiencing. It makes access to the care to critical.
Revisiting formularies and guidelines makes sense for patients. It makes sense for payers, too. By getting the right treatments to the patients who need them, industry can help lessen the impact of conditions like immune-mediated inflammatory disorders, as well as reduce payouts for therapies such as home health care and treatment for secondary conditions.
In the words of Jason, “If you get good treatment, you might save treatments down the road.” And in these circumstances, everyone benefits.
This article was submitted by Centocor Inc. for publication in BIOTECHNOLOGY HEALTHCARE.