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A picture can be worth a thousand words, and each one has a story to tell. Stories about moments and emotions shared with friends or loved ones can be forever captured and memorialized in a single snapshot. When you live with psoriatic disease, including plaque psoriasis or psoriatic arthritis, being in front of a camera and having the focus on you is not always easy. But it does not mean you have to live your life behind the scenes.

This year, award-winning portrait photographer Martin Schoeller along with 12-time Olympic medalist and best-selling author Dara Torres and others with psoriatic disease have come together for the SHOW MORE OF YOU campaign from Celgene. The campaign aims to help raise awareness of psoriatic disease and empower those living with it to let their true selves shine through.

PORTRAIT PHOTOGRAPHER MARTIN SCHOELLER ENCOURAGES OTHERS NOT TO FEAR THE SPOTLIGHT.

PORTRAIT PHOTOGRAPHER MARTIN SCHOELLER ENCOURAGES OTHERS NOT TO FEAR THE SPOTLIGHT.

As part of this campaign, Schoeller shot powerful portraits of those living with psoriatic disease. The portraits, which can be viewed at ShowMoreOfYou.com, include notable names like Torres who has been living with plaque psoriasis for two decades, sports analyst and former professional football player Mark Schlereth who is living with psoriatic arthritis and everyday people with psoriatic disease. The portraits aim to help convey the participants’ stories of strength and inspiration and empower others to show more of their true selves and embrace their imperfections, both in front of the camera and in everyday life.

As a storyteller, I want to bring out the true character of my subjects, and I believe the many faces of this campaign have inspiring stories to tell.

“As a storyteller, I want to bring out the true character of my subjects, and I believe the many faces of this campaign have inspiring stories to tell,” said Schoeller.

HEAR FROM DARA, MARTIN AND OTHERS IN THE BEHIND-THE-SCENES MAKING OF SHOW MORE OF YOU.

Psoriasis is a common, chronic skin condition that affects nearly 7.5 million Americans and results in increased skin cell growth that may appear on the skin as raised, sometimes red, patches covered with a silvery buildup of dead skin cells. Up to 30 percent of people with psoriasis may eventually develop psoriatic arthritis, so it is important to raise awareness about not only psoriasis but also psoriatic arthritis. More than 1 million Americans live with psoriatic arthritis — a potentially debilitating disease that involves significant pain to swelling in joints — and whose symptoms can impact a person’s everyday life, including common day-to-day activities.

I hope our stories empower others with psoriatic disease to follow their passions and show more of their true selves along the way.

Psoriatic disease can have both a physical and an emotional impact on those living with it. Torres, Schlereth and others shared their story about living with psoriatic disease in a behind-the-scenes video to help inspire others not to let it stop them from showing their true selves or doing the things they love.

“We are all from different walks of life, with different careers and backgrounds, but we all share similar journeys that only someone living with psoriatic disease can understand — and that is pretty special,” said Torres. “I hope our stories empower others with psoriatic disease to follow their passions and show more of their true selves along the way.”

To view Schoeller’s portraits, learn more about the SHOW MORE OF YOU campaign and share your photo of how you are showing more of your true self, visit ShowMoreOfYou.com.

PsA-Day-2016-logoMore than 1 million people in the U.S. live with psoriatic arthritis, or PsA. To educate the community about this chronic autoimmune disease, Celgene has partnered with the National Psoriasis Foundation (NPF) to launch the first-ever Psoriatic Arthritis Awareness Day on Wednesday, September 28th, 2016.

PsA-Day-2016boxPsA Awareness Day is a day dedicated to raising awareness around the importance of recognition, diagnosis, and treatment. People are encouraged to join the movement at GoPsADay.com to learn factors associated with PsA, to help spread the word via their social channels, and to stand up and be counted for those living with this disease.

Psoriatic arthritis is a chronic inflammatory disease characterized by swelling, pain, and tenderness of the joints. It is also associated with the skin condition, psoriasis. In fact, in 85 percent of PsA patients, psoriasis occurs before joint disease.

It can be challenging living with this disease and can impact a person’s common day-to-day activities, such as walking up the stairs, driving a car, and doing laundry. While there is no cure, PsA can be managed. Early recognition, diagnosis, and treatment are critical to relieve the pain and inflammation of PsA. That is why it is important to know about some of the factors associated with PsA:

PsA-Day-2016factorsThose who are experiencing any of the common symptoms of PsA should contact their healthcare team.

To learn more about PsA and help spread the word about awareness day efforts, visit GoPsADay.com.

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After years of forgoing treatment, psoriatic arthritis patient Robert Kane decided to take a look at new options. Source: Robert Kane

After years of forgoing treatment, psoriatic arthritis patient Robert Kane decided to take a look at new options. Source: Robert Kane

For more than two decades, Robert Kane refused to treat his psoriatic arthritis or the accompanying psoriasis. He had been diagnosed with the immune-inflammatory diseases when he was 12 and had since tried the gamut of medications to calm his itchy, scaly skin and achy joints. But the therapies either didn’t work or came with a host of side effects.

In 1990, Kane quit trying. “I was very frustrated by my doctors, so I just stopped seeing them,” he said. Even when his hands started to lock up, he just assumed that treatment wouldn’t be worth it.

Last May, some skin spots he suspected could be cancerous finally sent him back. While giving Kane the good news that he was cancer-free, his physician recommended Kane try a new therapy for his skin and joint woes. “I was very hesitant,” Kane recalled. “I had given up on treatments.”

Luckily, his doctor convinced him to give it a shot. Today, Kane is glad he did—his skin has cleared up, and his joints no longer bother him during the winter. “I’m so in shock that I’m clear for the first time in 38 years,” he said.

Psoriatic Arthritis Patients Face Serious Risks and Symptoms

While psoriasis is a skin disorder, almost a third of people affected also develop psoriatic arthritis—sore and swollen joints caused by the same underlying immune-inflammatory disorder that leads to the skin symptoms. Since May is Arthritis Awareness Month, it’s a perfect time for psoriatic arthritis patients to re-evaluate their treatment.

Rheumatologist Jason Faller of Mount Sinai Hospital believes that psoriatic arthritis patients should consider new treatment options. Source: Jason Faller

Rheumatologist Jason Faller of Mount Sinai Hospital believes that psoriatic arthritis patients should consider new treatment options. Source: Jason Faller

Historically, psoriatic arthritis has been treated with steroids or other systemic anti-inflammatories. More recently, biologics—drugs derived from living cells that are given by injection or IV—have been introduced. But these treatments can have serious side effects and don’t work for everyone—as Kane learned first-hand. As a result, many patients go untreated; one recent study found that 59 percent of psoriatic arthritis patients are not taking a systemic therapy, and 45 percent of psoriasis patients had not seen a doctor in at least a year.

“When people hear the list of side effects, some say they just don’t want to go there,” Jason Faller, assistant clinical professor of Medicine and Rheumatology at Mount Sinai Hospital, said.

Over the past decade, though, a handful of new treatment options have hit the shelves, offering new choices with different safety and efficacy profiles.

I took a chance, and I’d encourage other people to talk to their physicians as well.

Staying with a new therapy for at least 16 weeks should give patients a fair sense of whether it will be effective for them, according to Dr. Faller. In the best case, patients can find a new treatment that eliminates all their symptoms, like Kane did.

“I took a chance, and I’d encourage other people to talk to their physicians as well,” Kane said. “At one point, as a kid, 85 percent of my body was covered by psoriasis. Now I don’t have a spot on me.”

Psoriatic arthritis (PsA) is a painful and debilitating chronic condition that affects more than 1 million Americans. The prevalence is more than the number of people living with other serious conditions, such as, amyotrophic lateral sclerosis (ALS), Lyme disease, and multiple sclerosis combined! However, the number of people living with PsA may be even higher given the disease is often misdiagnosed and underreported.

PsA is a chronic inflammatory condition, which is characterized by swelling, pain, and tenderness of the joints and affects people’s ability to walk or even climb stairs easily. Unfortunately, there is no definitive test for PsA, and diagnosis is sometime complicated by the fact that some of the symptoms of PsA are similar to rheumatoid arthritis, gout, and reactive arthritis.

BeCountedLogo3

To help support the PsA community, Celgene has launched Be Counted!, an educational initiative to raise awareness of this chronic condition. Be Counted! brings together advocates, patients, and experts to help rally support, share their perspectives, and educate the public on the disease and need for awareness.

At the website, PsACounts.com, you can watch videos featuring those living with PsA, advocates, and a rheumatologist to get an inside glimpse into their personal experiences with PsA, and find facts and resources about the condition. You can also encourage others to show their support by viewing the videos on the website, and sharing them on your social channels. As more people watch the videos, a live heat map will populate directly on the site to show how awareness is growing and spreading throughout the US.

Visit PsACounts.com to learn more, show your support, and help make PsA Count!

Jaime and Andy Moy both have been diagnosed with psoriatic arthritis. Source: Ian Houston

Jamie Moy and her son Andy both have been diagnosed with psoriatic arthritis. Source: Ian Houston

Between 2004 and 2007, Jaime Moy, a 38-year-old graphic designer in Waterford, Michigan, and her family were hit with a double whammy. Within that time period, both she and her young son Andy were diagnosed with psoriatic arthritis.

The disease affects their daily lives: Moy’s hands hurt simply from manipulating her computer’s mouse—something she does often in her photo editing work. And her son, who is now 17, couldn’t keep up with the other kids when he was younger and has opted out of gym class since the sixth grade. On top of that, her family has to worry about how to pay for their medications.

Luckily, they were eligible to join a state-run program that provides financial assistance for children with chronic health problems. “We’re very fortunate, but we’re in the minority. A lot of psoriatic arthritis patients can’t afford their treatments,” said Moy.

As we gather at the American College of Rheumatology Annual Meeting in San Francisco today to talk about medical advances that improving the lives of patients like Moy, we are reminded that these advances are moot if patients do not have affordable access to them.

While new treatment options may offer hope, insurers are placing these medications out of reach for those with psoriatic arthritis by categorizing them as “specialty tier” medications, meaning patients pay up to 50 percent of the cost.

Psoriatic arthritis patients face high copays for treatments.

 

The Moys’ monthly treatment costs top $7,500, which would be unaffordable for them without financial assistance. “If we weren’t eligible for that program, I honestly believe we would have filed for bankruptcy,” Moy said.

Many others are in the same boat. In fact, 44 percent of those with a psoriatic disease surveyed by the National Psoriasis Foundation in 2013 said they struggle to afford their treatments.

When patients can’t afford their medications, they are more likely to stop treatment. For those with psoriatic arthritis, this could lead to persistent inflammation, joint damage, physical limitations, disability and even a shorter life. Without her and her son’s treatments, Moy believes both of them would be spending most of their days in wheelchairs.

Insurers have no incentive to change their ways, since specialty tiering is profitable. It’s not surprising, then, that the percentage of employer health plans that use specialty tiers has increased from 3 percent in 2004 to 23 percent in 2013.

Psoriatic Patients Struggle to Pay for Treatments

Today, Moy is working with the Arthritis Foundation and the National Psoriasis Foundation to find solutions. These organizations have joined more than 30 other advocacy groups to form the Coalition for Accessible Treatments, which has called for legislative action to improve patient access to treatments.

Some in Congress have heard their call. Earlier this year, Reps. David B. McKinley and Lois Capp introduced the Patients’ Access to Treatments Act of 2015, which aims to limit how much patients pay for specialty tier medications. So far, the bill has received 95 cosponsors.

It’s really sad when psoriatic arthritis patients have to choose between putting food on the table and taking their medicine so that they don’t get further joint damage.”

The bill could have a meaningful impact not only for the over 500,000 Americans living with psoriatic arthritis, but also the 13 million who have cancer, 1.5 million who have rheumatoid arthritis and 400,000 who have multiple sclerosis.

Insurers warn that such limitations would significantly increase premiums, but that argument doesn’t hold much water. A 2013 study has shown that limits would increase premiums by only $3 per year. The reason: specialty therapies only represent 2 percent of health spending in these plans.

The ball is in Congress’ court; there’s no good reason this bill should not be a priority. Moy and other patient advocates are encouraging their followers to contact their representatives in Congress and ask them support the bill.

“It’s really sad when psoriatic arthritis patients have to choose between putting food on the table and taking their medicine so that they don’t get further joint damage,” Moy said. “We can and should do more to help them.”

 

As patients and their families raise awareness of issues affecting people with rheumatic and musculoskeletal diseases on World Arthritis Day, they recognize the important progress that has been made in understanding and treating these conditions. And they celebrate the fact that the future may be even brighter with the new treatment options currently being developed.

But some health care systems are failing patients with psoriatic arthritis and other musculoskeletal diseases, according to leading rheumatologists. Patients are having difficulty finding specialists, getting referrals and paying for their therapies.

“We have a general concern in the rheumatology community that musculoskeletal diseases such as psoriatic arthritis are not taken seriously enough,” Anthony Woolf, professor of rheumatology at the Cornwall Hospital in the United Kingdom, said. “There is a lack of awareness on what can currently be achieved for these patients with regard to early diagnosis and the use of modern therapies.”

Ensuring consistent care around the world is a challenge because health care policies can vary greatly from one country to another. “In general, the poorer a given country is, the more of a problem access to health care resources becomes,” Woolf said.

In Europe, according to one study, 40 percent of the population—about 320 million people—has “severely restricted” access to treatments for musculoskeletal diseases.

In Europe, according to one study, 40 percent of the population—about 320 million people—has “severely restricted” access to treatments for musculoskeletal diseases.

The financial crisis has only made this situation worse. Although policymakers remain committed to protecting health care, economic pressure has led to close inspection of treatment cost-effectiveness.

Policies addressing this issue have traditionally measured a medicine’s value in terms of improvements in survival rates or life expectancy, often neglecting the economic, emotional and social impact as well as the comorbidities associated with chronic diseases.

People need to understand the true costs of musculoskeletal diseases.

“People need to understand the true costs of musculoskeletal diseases,” Woolf said. People in pain are less likely to go to work, less likely to contribute to a country’s economic growth. And not treating musculoskeletal issues now can lead to more expensive issues to deal with down the road. “The data show that the sooner you treat the disease, the better the outcomes are in terms of function and joint damage,” Woolf said.

Rheumatic and musculoskeletal diseases are among the most costly diseases and account for almost a third of all disability claims in Europe. In particular, patients with psoriatic arthritis face unemployment rates as high as 50 percent and workplace disability rates as high as 39 percent.

Although early treatment could help reduce unemployment and disability, many with psoriatic arthritis go years before receiving a proper diagnosis. In a recent survey of North American and European dermatologists and rheumatologists, over 75 percent believe that one reason behind this lag is a failure of the examining physicians to connect skin and joint symptoms. Research suggests that better dialogue between dermatologists and rheumatologists could help improve the situation.

To improve coordination and develop a more integrated model of care, new health care policies that provide simple, straightforward protocols are needed. Development of such standards is finally underway in Europe. Funded by the European Commission (EU) and the European League Against Rheumatism (EULAR), the European Musculoskeletal Surveillance and Information Network project has published evidence-based and patient-centered standards of care for rheumatoid arthritis, which will be made available in all 23 European languages.

Similar standards of care for other musculoskeletal diseases, including psoriasis arthritis, are also needed. Once these standards have been developed, health care systems audit their providers against them.

New policies have the potential not only to improve the quality of their lives but also to reduce the economic and societal impact of some of the most debilitating chronic diseases of the world. Last year, the World Health Organization recognized the need for better awareness and care for psoriasis and psoriatic arthritis, encouraging governments worldwide to take action.

As global populations continue to age, recognizing this possibility becomes increasingly important.  “Policy makers are growing concerned about how health care is going to be affected by the aging population,” Woolf said. “We have a good opportunity coming with a more integrated model of care to help people with a musculoskeletal disease manage their conditions better.”

Although biologics have advanced the treatment of psoriasis and psoriatic arthritis, this therapy class is not meeting the needs and preferences of all patients. According to a recent patient survey, nearly half of surveyed patients who have been prescribed biologic therapies found their treatment “burdensome.”

“The choices for biologics are fairly limited,” said Dr. Kimme Hyrich, a rheumatologist at the University of Manchester. “Because of the way the molecules work within the drug, it is actually not possible to take these drugs orally, so they have to be given by injection [at home] or by infusion at a hospital once a month.”

Nearly half of surveyed patients who have been prescribed biologic therapies found their treatment ‘burdensome.’

For some, these treatments can be painful and can lead to fear and anxiety over injections. “The first time I had to inject myself, I put the needle back in the refrigerator to think it over,” Howard Chang, a psoriasis patient being treated with a biologic, wrote on his blog. “I finally did gather enough courage to inject myself, wondering for days after if I had done it correctly. Putting a needle into my own leg or stomach felt like the most counter-intuitive action I could engage in.”

Aside from pain, there’s also inconvenience. Preparing for the injections takes time out of a patient’s day. Since biologics are relatively unstable, they must be stored in a refrigerator then warmed to room temperature just before use. And to reduce pain, doctors recommend that patients ice the injection area before treatment.

Fear, anxiety and physical preparation of these injections make biologics burdensome, according to 31 percent of the psoriasis and psoriatic arthritis patients surveyed. Another 20 percent of patients reported that biologics were just overall inconvenient. The burden and inconvenience of biologics together led some patients to discontinue treatment.

For younger patients, convenience and practicality might be especially important. Twenty-five young adults with arthritis said they prefer treatments that do not interfere with their normal day-to-day life, according to an ongoing study at Newcastle University.

Aside from convenience, younger patients below the age of 18 should also be aware that side effects of biologics in young adults are not well understood, according to Hyrich. “It’s important that these drugs be researched in that age group, because often these patients are omitted from clinical trials because they are not old enough,” Hyrich said.

Education may help patients better accommodate biologic treatments into their lives, according to Hyrich. Yet the ultimate goal is to have more convenient, effective options. “There is still a hunt for oral alternatives to biologics, including more targeted therapies,” she said.

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Psoriasis and psoriatic arthritis patients believe new effective treatment options are needed, according to a recent patient survey.

The Multinational Assessment of Psoriasis and Psoriatic Arthritis (MAPP) survey included perspectives from 781 physicians and 3,426 patients in the United States, Canada, France, Germany, Spain and the United Kingdom. An analysis of the results was published recently in the Journal of the American Academy of Dermatology.

Overall, 85 percent of psoriasis and psoriatic arthritis patients surveyed thought that better therapies are needed. Although oral medications and biologics are available to treat the diseases, almost 60 percent of patients reported they were not currently receiving treatment.

“Many patients are not eligible for or refuse to initiate treatment with the available oral and biologic therapies, and the remainder are subject to early treatment discontinuation,” Lauren Schrier, global product manager at Celgene, said.

Overall, 85 percent of psoriasis and psoriatic arthritis patients surveyed thought that better therapies are needed.

Indeed, 57 percent of surveyed patients who had taken an oral medication discontinued treatment. For those who had taken a biologic, 45 percent discontinued treatment.

While patients cited several reasons for discontinuing treatment, the most common answers were safety, tolerability and effectiveness. These findings underscore the need for effective new treatment options that have side effect profiles patients can deal with.

“If one cannot take the biologics, what else is there?” Sue Ellen, a psoriatic arthritis patient, wrote in a blog post. The biologic therapies that she tried were either ineffective or caused adverse reactions

“We are always trying to find another drug for treating these patients,” Christopher Morris, MD, a private-practice clinician in Kingsport, Tenn., said in an interview with MedPageToday. Morris believes that a newer therapies may provide patients who are not responsive to biologics with another option.

As health care moves toward a patient-centered model, clinical researchers should listen to the needs of patients, to develop therapies that patients will appreciate. Improving treatment adherence, by addressing the reasons patients discontinue therapy, can lessen the burden of disease.