Blog Archives

Posted on by

Heather Kagel, an Ambassador for the Pulmonary Fibrosis Foundation, lived an active lifestyle before she was diagnosed with idiopathic pulmonary fibrosis (IPF). Now, her life has slowed significantly.

“The most difficult part is the realization that your life might not pan out the way you thought it would,” Kagel said. “It’s hard to let go of what you planned for and create a new normal.”

About 100,000 people in the United States like Kagel are affected by IPF, and up to 40,000 new cases are diagnosed each year.

IPF results in progressive scarring of the lungs that makes it difficult to breathe in enough oxygen. Many patients experience fatigue, shortness of breath, a dry persistent cough, unintended weight loss and joint and muscle aches.

While the prognosis for IPF is unfavorable, Kagel remains thankful for what she has. She is helping educate other patients, so they get the right diagnosis and appropriate medical care as early as possible.

“Time is of the essence in this disease,” Kagel explained. “You have to know what it is early so you can live your best life with the time that you have.”

Watch the video below to learn more about IPF and how Kagel copes with her disease.

To learn more about Celgene’s commitment to rare disease research, read “Supporting Research to Find Cures for Rare Diseases.”

Millions of Americans who rely on Medicare Part D may be facing sticker shock in 2020 if solutions that address out-of-pocket costs and access are not enacted quickly, based on a report from the Lupus Foundation of America.

Medicare Part D provides prescription drug coverage to more than 44 million Medicare recipients. While prescription drug coverage under part D hasn’t been around for as long as people may think, its popularity stems from its far reaching importance to the overall health of its millions of beneficiaries.

“Medicare did not offer a prescription drug benefit until Part D was enacted in 2003,” said Patrick Wildman, vice president of Advocacy & Government Relations for the Lupus Foundation of America. “Since then, it has greatly improved the health of so many people.” Beneficiaries include lupus patients, who incur an average of $12,643 per year in direct health care costs.

While Part D has been a big step, Wildman believes policymakers need to address looming challenges, including the impending “out-of-pocket” cliff, specialty tiers and more. The right policies will protect prescription medication coverage for America’s seniors, but Wildman notes we need the political will to make them happen.

The “Out-of-Pocket” Cliff

In 2005, the Lupus Foundation of America established the Medicare Access for Patients Rx (MAPRx) coalition — a group of more than 55 patient advocacy organizations representing seniors who depend on Medicare Part D for their prescription medications. The coalition recently published a report highlighting some of the challenges faced by Part D beneficiaries.

The most pressing issue, according to the report, is a steep increase in the “out-of-pocket” threshold, the amount patients pay before entering catastrophic coverage where their payment responsibility for their medicines drops to five percent for the remainder of the plan year. The Affordable Care Act capped how much that limit could increase each year. But the limit on growth of the threshold is set to expire in 2020, adding $1,250 to threshold in just one year, unless Congress acts.

“It is a looming crisis,” Wildman said. “As a coalition, we are worried that with that big of a spike, people may have challenges accessing medication they need.”

Infographic of Medicare Part D, Out of Pocket Spending

Specialty Tiers on the Rise

Part D plans also have been increasingly placing more medications on specialty tiers, which force seniors to pay up to a third of the costs for certain particularly expensive treatments. A study found that Part D beneficiaries pay an average of $3,949 annually out of pocket for specialty treatments for rheumatoid arthritis, $5,238 for multiple sclerosis and $6,322 for chronic myeloid leukemia. These chronic illnesses require several treatments that are frequently listed on specialty tiers.

Part D beneficiaries have no recourse to request exceptions to specialty tier pricing, either.9 The MAPRx coalition is fighting to change that.

“I think we need to fundamentally address the role of specialty tiers in Part D,” Wildman said. “Placing a medication on a specialty tier may stop some patients from filling their prescriptions and getting the treatment that they need.”

There is a lot of work still to be done to improve Medicare Part D for our seniors.

Improving Part D with an Out-of-Pocket Cap

While Medicare Part B beneficiaries can enroll in additional coverage that limits their annual out-of-pocket spending, most Part D beneficiaries must pay 5 percent of their medication costs after they hit the catastrophic phase without limit. Depending on what medications they have been prescribed, this can amount to thousands of dollars each month. But by putting an out-of-pocket cap in place, however, policymakers could help Part D beneficiaries better manage the financial burden of their conditions and illnesses, according to Wildman.

Strengthening and protecting access to medications is critical for millions of seniors with chronic diseases. The first step in this process, according to Wildman, is to convince policymakers how important the benefit is for seniors and people with disabilities, as well as others who depend on it. The coalition also wants to ensure that existing patient protections within the program stay in place and that recently introduced pricing policies do not restrict access.

“There is a lot of work still to be done to improve Medicare Part D for our seniors,” Wildman said. “We are looking forward to strengthening the program in the years to come.”

To learn more about Medicare Part D, read “Medicare Part D: 10 Years of Successfully Meeting Seniors’ Needs

When treating a chronic disease such as psoriasis or psoriatic arthritis, time is of the essence: every day that a patient goes without an effective treatment is another day of suffering. Unfortunately, three-quarters of large employers offer their employees insurance plans that use step therapy policies, which can often delay patients from getting access to the medications prescribed by their doctors.

“You could be looking at a nine-month process before you get access to the doctor’s recommended treatment,” said Patrick Stone, vice president of government relations and advocacy at the National Psoriasis Foundation (NPF). “Insurance plans need to get patients access to medications their doctors determined were right for them sooner than that. They deserve better.”

Many states have stepped up to protect patients from step therapy procedures by enacting legislation that limits the use of step therapy, with Minnesota and New Mexico being two of the latest examples.

The Problems of Step Therapy

PATRICK STONE

PATRICK STONE FROM THE NATIONAL PSORIASIS FOUNDATION SAYS THAT THE ORGANIZATION IS NOT STOPPING UNTIL LEGISLATION PROTECTING PATIENTS FROM STEP THERAPY IS PASSED IN ALL 50 STATES AND ON THE FEDERAL LEVEL.

If a prescribed treatment isn’t on the insurer’s preferred medications list, the insurer may deny it until a patient tries and “fails” on one or more of the preferred options. This process, called step therapy, is commonly practiced among major private insurance plans.

Step therapy is based on a one-size-fits-all approach, assuming that patients respond similarly to treatments. But in reality, patients with chronic diseases such as psoriasis and psoriatic arthritis can have very different responses to the same medication.

Step therapy is not unusual in rheumatology and dermatology despite the fact that many of these chronic diseases are associated with serious comorbidities. Psoriasis and psoriatic arthritis patients can suffer from other ailments, making it even more important to address the disease effectively and promptly with appropriate therapies.

4 The Average Number of Treatments Psoriasis Patients Try

“Step therapy reform is a high priority for the psoriasis and psoriatic arthritis community,” Stone said. “If you’re not treating psoriatic arthritis in a timely and appropriate manner as determined by your doctor, it can certainly become a disabling disease.”

Reigning in Step Therapy

Recently passed step therapy reform legislation does not stop insurance carriers from enacting cost control measures. Instead, the laws are intended to protect patients by providing a timely exemption process to override step therapy procedure.

Over the past four years, the NPF has led a number of campaigns at the state and federal levels with other patient and provider groups across the country.

In 2018, New Mexico passed step therapy reform legislation. “As a result of step therapy legislation, people living with a psoriatic disease in New Mexico have better access to prescribed treatments,” Stone said. The total number of states that have enacted step therapy legislation is now up to 19.

The most effective spokespeople for step therapy legislation have been the patients, according to Stone. When legislation was being considered in Texas last year, a 16-year-old with psoriatic arthritis named Michael from San Antonio met with state legislators. In a room filled mostly with lobbyists, the Speaker of the House only wanted to hear from one person: Michael, who shared how step therapy delayed his treatment and the trouble that caused him. “Michael did a better job than any lobbyist could in articulating the issue,” Stone said.

As a result of step therapy legislation in Minnesota and New Mexico, the more than 190,000 Americans living with a psoriatic disease in those two states have better access to prescribed treatments.

Next Steps

With most state legislatures having already adjourned for the year, Stone and the NPF are already planning for 2019. “In the upcoming year, we plan to renew efforts in Florida, Georgia, Washington and Maine, while also exploring options in other states with no prior legislative attempts,” said Stone. “Meanwhile, states like Pennsylvania, Virginia and Oregon are considering folding step therapy regulations into larger bills aimed at protecting patients from insurance practices.”

“The momentum is behind us going into the 2019 legislative sessions,” Stone said. “We have a game plan in place already. We know what states we’ll be in, and we’re excited about the potential for large amounts of legislative victories during the next couple years regarding step therapy reform.”

Meanwhile, at the federal level, the administration recently announced that it would allow step therapy in Medicare Advantage plans for Part B medications, which are typically administered in a hospital or clinic setting. Step therapy is already allowed in Medicare Part D plans, which covers at-home prescription medications.

“Medicare Advantage holders are senior citizens and those who are permanently disabled,” Stone said. “That makes it even more difficult for them to understand how the mediation process works and how to appeal it. So we’ve still got plenty of work to do to protect them.”

To learn more about why the one-size-fits-all approach doesn’t work in psoriasis, read “Psoriasis Patients Deserve Their Prescribed Therapy Without Delay.”

At Celgene, bold science that benefits patients is at the core of our values and our business. Each year, Celgene’s cutting-edge medical research helps more patients around the world. While patients are the focus of our mission, we also take very seriously our responsibilities to our employees, our communities and our environment—responsibilities that we continue to live up to. Celgene’s 2018 Corporate Responsibility Report, released this week, highlights how we are working to make a difference in the lives of patients, communities and economies around the world.

“We are at a very important time in our company’s journey to help patients and create increased value for our stockholders,” Mark J. Alles, Chairman and Chief Executive Officer of Celgene Corporation, said. “Over the next two years, we expect to advance five late-stage products toward regulatory approval. These therapies represent the promise of our industry-leading investments in research and the beginning of our next wave of innovation.”

Patients First

Celgene’s commitment to changing the course of human health includes helping patients living in developing parts of the world. In 2017, Celgene joined 24 biopharmaceutical companies in the Access Accelerated partnership to improve access to treatment and care for non-communicable diseases — such as cancer — in low- and middle-income countries.

2018 Corporate Responsibility Report

During its first year, the partnership moved toward its goal by advancing 62 programs, including the Celgene Cancer Care Links™ grant program1 and the Academic Model Providing Access to Healthcare (AMPATH) Oncology Partnership, which Celgene joined in 2011 to increase access to cancer diagnosis and treatment in Kenya.

Celgene introduced the Cancer Care Links™ in December 2017 to improve cancer care in resource-constrained countries by giving organizations with existing infrastructure an opportunity to apply for grants to support oncology training, cancer prevention and detection, nursing programs, general medical support, pharmacy programs, and awareness and education initiatives. The first grant recipients were announced in December 2018.

This past March, Access Accelerated hosted a forum in Kenya, where Zeba Khan, Ph.D., Vice President of Corporate Responsibility for Celgene, took part in a panel to discuss the AMPATH Oncology Partnership. “Our partnership with AMPATH works within the current healthcare system to address a local need and to improve multiple myeloma care in Kenya,” Khan said.

ENGAGING ACROSS SECTORS AND DISCIPLINES TO ADDRESS NCDs

THE “ENGAGING ACROSS SECTORS AND DISCIPLINES TO ADDRESS NCDs” PANEL INCLUDED PATIENTS, HEALTHCARE PROFESSIONALS, BIOPHARMACEUTICAL COMPANIES, NON-PROFIT ORGANIZATIONS AND KENYA’S MINISTRY OF HEALTH.

Supporting Communities and the Planet

At Celgene, we’re committed to making a positive impact on the communities where we work and live through giving and volunteerism, and to the health of the planet through environmental stewardship and resource conservation.

Last year, more than 2,000 Celgene employees ran, cycled or walked in races and events to support finding a cure for serious diseases, including blood cancers, pancreatic cancer, psoriasis and psoriatic arthritis. In 2017, more than 1,000 Celgene employees helped raise $700,000 to support the Leukemia & Lymphoma Society’s Light The Night® events, making Celgene its top biopharmaceutical fundraising partner. Celgene was also the first National Presenting Sponsor of PurpleStride®, the Walk to End Pancreatic Cancer, in 2017. More than 280 employees participated in 52 PurpleStride walks and runs, raising $57,000.

Meanwhile, Celgene is making strong progress to meeting our 2020 environmental goals, which focus on reducing our carbon footprint, investing more in renewable electricity, reducing water withdrawal and reducing waste generation. This year, Celgene expanded its portfolio of LEED®-certified buildings and continued our trend of purchasing renewable energy. Renewable sources now make up 50 percent of all power used by Celgene worldwide, and wind-powered electricity fuels 73 percent of U.S. facilities’ energy. This achievement has resulted in an invitation to join the U.S. Environmental Protection Agency’s Green Power Partnership.

Built on Integrity

Celgene’s business culture is built on integrity, ethics, sound decision-making and behaviors that reflect our values and focus on patients. This year, Celgene joined the Pharmaceutical Supply Chain Initiative (PSCI) to enhance sustainability within our supply chain and was recognized for excellence in responsible clinical trial data sharing in the Bioethics International Good Pharma Scorecard, ranking in the top five for Clinical Trial Transparency.

Whether it’s sharing clinical trial data or providing grants to organizations in resource-constrained countries to improve the cancer care infrastructure, the common thread that binds our employees and all our activities is our focus on putting patients first. “We remain steadfastly committed to our mission, as we work to discover, develop and deliver to patients new and even more effective ways to improve and extend the lives of patients around the world,” Alles said.

To learn more about Celgene’s Corporate Responsibility activities, read the 2018 Celgene Corporate Responsibility Report.

More people are being diagnosed with Crohn’s disease and ulcerative colitis than ever before, but researchers aren’t exactly sure why. A variety of factors including genetics, weakened immune systems and the environment may be at play.

In this podcast produced for this year’s Crohn’s and Colitis Awareness Week, Cathy Ferrone, director of patient advocacy at Celgene, and Laura Wingate, senior vice president of Education, Support and Advocacy at the Crohn’s and Colitis Foundation, discuss the rise in worldwide incidence rates of inflammatory bowel disease and why research in this area remains so important.

 


CATHY FERRONE FROM CELGENE AND LAURA WINGATE FROM CROHN’S AND COLITIS FOUNDATION DISCUSS THE RISE IN INFLAMMATORY BOWEL DISEASE.

 

To learn more about the lifelong struggle of having an inflammatory bowel disease, read “What It’s Really Like to Live with Ulcerative Colitis.”

To explore the Crohn’s & Colitis Foundation’s resources available to patients, caregivers and health care professionals, visit their website at http://www.crohnscolitisfoundation.org/ or call 1-888-My-Gut-Pain.
 

Lung cancer remains the leading cause of cancer-related death in both men and women in the United States. And for America’s veterans, that risk is even higher as they are 25 percent more likely to be diagnosed with lung cancer than those who did not serve in the military.

As we recognize this year’s Veterans Day, Laurie Fenton Ambrose, President and CEO of Lung Cancer Alliance, explains how early detection and the treatment of lung cancer is evolving in and benefiting the veteran community, and what still needs to be done to improve the care for the men and women who have served our country.

Why are veterans disproportionately affected by lung cancer?

“Veterans are disproportionately affected for two key reasons: their smoking history and their occupational exposures. First, veterans have a higher prevalence of smoking than the civilian population. Many use smoking as a way to cope with the stress of their occupation and cigarettes were readily available to them while in service. At the same time, veterans were also exposed to a variety of chemicals that are linked with an increased risk of lung cancer, such as asbestos, Agent Orange, burn pits and chemical weapons.”

Why is treating veterans with lung cancer challenging?

LAURIE FENTON AMBROSE

LAURIE FENTON AMBROSE, PRESIDENT AND CEO OF LUNG CANCER ALLIANCE, IS HELPING TO LEAD THE CHARGE IN IMPROVING PREVENTION, SCREENING AND TREATMENT OF LUNG CANCER IN THE VETERAN COMMUNITY.

“Research has shown that many Veterans’ Affairs facilities are not prepared to implement comprehensive lung cancer screening programs. More work needs to be done to support the investment in infrastructure and resources to offer more coordinated care to American veterans with lung cancer as quickly as possible.

We also need to address the stigma associated with having lung cancer—which affects how the disease is both resourced and advocated for — and the comorbidities that many veterans face in addition to lung cancer.”

How is Lung Cancer Alliance working to improve care for veterans with lung cancer?

“We are working with military facilities and programs to reduce tobacco use and exposure. We are also working on awareness campaigns to alert veterans to their elevated risk for lung cancer as well as directing them to responsible screening and care so that we catch and manage the disease early.”

Why is early detection so important?

“Because it can save your life. Just like other diseases with approved screenings, you see higher survival rates in those whose disease has been caught early by screening. Now lung cancer can join this fold. Simply put, if you find lung cancer in its earliest form, you improve your treatment options and your quality of life. But right now, approximately 75 percent of lung cancers in the general population are diagnosed at late stage when there are fewer effective treatment options.

We need to highlight the benefits of screening and make sure that it is made available to our veterans. Studies have shown that low-dose CT screenings can decrease lung cancer death rates if we provide adequate resources and infrastructure. It’s key that we make sure everyone at risk—including our military community—is aware that these screenings are available to them.”

We’re at a pivotal moment right now with lung cancer screening and treatment advances, and we are seeing more lung cancer survivors than ever.

How are the efforts to improve screenings going so far?

“Screening is a fairly new preventive service. The federal government gave a green light just four years ago for coverage. So, we are now working hard to “ramp-up” this service in communities across the country. This involves bringing national awareness to the issue as well as educating providers and those at risk of the benefits and risks. We are also committed to making sure screening and care is being provided in the most responsible way in medical centers and considering how we collect information to help further improve early detection and treatment options. It is not easy. It takes time. But we are focused on moving this forward as rapidly as possible.

The challenge I see is that there isn’t the same sense of urgency and focus around lung cancer screening as we have seen with other cancers such as breast and colon. That’s likely related to the stigma around this disease. We really need more national attention on this issue.”

How are new treatment options helping patients with lung cancer?

“New treatment options for patients with lung cancer are improving care and bringing hope. For example, we have more targeted therapies and immunotherapies being paired with chemotherapy to treat lung cancer today than we have had in decades.

When you combine these new therapies with the ability to detect lung cancer earlier, outcomes can be more favorable for early stage patients. This one-two punch is making a dent in the high mortality rates. We’re seeing five-year survival rates rise to 19 percent; a leap forward from where we were in the 1980s, when five-year survival was only 13 percent. We’re at a pivotal moment right now with lung cancer screening and treatment advances.”

What else should veterans know about lung cancer?

“No veteran should ever feel alone. We are ready to support them. That’s what Lung Cancer Alliance is here to do. Veterans should know that there’s a place where they can go to feel part of the community and find information. We are honoring their service by making sure our service is there for them.”

To learn more about how researchers are developing new treatments strategies for lung cancer, read “Hitting Moving Targets in Lung Cancer Subtypes.”

In August 2005, Amelia List celebrated her first birthday, and her mother Julie breathed a sigh of relief. She had feared Amelia would develop severe food allergies, as her five-year-old sister Autumn had, by the time she turned one. But it was so far, so good.

Unfortunately, everything went downhill from there, Julie recalls. A month later, the entire family got the stomach flu. Everyone recovered well except for Amelia, whose vomiting and diarrhea continued. Six weeks later, she had lost 20 percent of her body weight. Julie and her husband took their daughter to a gastroenterologist, who diagnosed Amelia with eosinophilic esophagitis.

Having already joined several food allergy forums online, Julie knew what that meant. Eosinophilic esophagitis was not your typical allergic reaction to food. She turned to her husband. “We’re going to be one of those people whose kid can only eat one or two foods,” she told him.

More than 150,000 children and adults in the United States live with eosinophilic esophagitis, a relatively new disease that was only first recognized in the 1990s. There are currently no FDA-approved pharmaceuticals to treat EoE. Symptoms may be managed with elimination diets and other methods. Julie is sharing their story to raise awareness of the disease, with the hope that more can be done to improve their daily struggle.

Identifying Triggers

Julie knew eosinophilic esophagitis was not a typical food allergy, but she was stunned when their local gastroenterologist told them that he could only diagnose but not treat the condition. In fact, at that time, there was no doctor near their home in South Carolina who treated this rare disease. For the next four years, the family traveled eight hours to Cincinnati to see a specialist whenever necessary.

The doctor explained that proteins in the foods Amelia was eating were triggering a type of white blood cell called eosinophils to inflame her esophagus. This inflammation led to her vomiting, difficulty swallowing and recurring stomach pain.

Amelia underwent food trials to identify her food triggers, eating one or more foods at a time for two months to see whether they made her sick. If they didn’t, she’d get an endoscopy to check her upper digestive tract for inflammation. Her doctor would put her under anesthesia and insert a flexible tube with a camera into Amelia’s upper digestive tract.

Her doctor also took six to ten biopsies throughout the esophagus to determine if eosinophils were present. “The biopsies can reveal if eosinophils are present and causing damage that is not visible to the eye,” Julie said. “We never knew if food was safe until the biopsy results were returned.”

She went through this process with a dozen foods. To get her required nutrition, Amelia was given an amino-acid based formula through a gastric feeding tube. “The formula had no proteins that would trigger allergies, but it tasted terrible,” Julie said.

We never tell them they can’t do anything.
We’ve tube-fed Amelia while hiking.

Overcoming Setbacks

In 2007, the List family received more devastating news when their middle child, Abby, was diagnosed with eosinophilic esophagitis at the age of six. Studies have shown that siblings of someone with eosinophilic esophagitis are at increased risk for the disease, suggesting a role for genetic factors. Environmental factors are also thought to have a role.

Then in 2016, Amelia had a severe, life-threatening allergic reaction to white rice, her first allergic reaction unrelated to her eosinophilic esophagitis. Her immune system reacted, and Amelia soon found she could no longer eat any of the foods she previously tolerated.

Amelia resumed consuming formula through the gastric tube but then started reacting to that, too. To help tolerate the formula, she takes medication twice a day. She once again began food-testing with endoscopies to validate new safe foods. Since her initial diagnosis, Amelia has had 32 endoscopies and counting.

Today, she continues to consume formula, but it is not her sole source of nutrition. She can eat seven foods: apples, sweet potatoes, kidney beans, soy, millet flour, turkey and black olives. “For sure, you get sick of them, but I just have to keep eating them,” Amelia said. “I really don’t have any other choice.”

Growing Up Quickly

Amelia has been administering her own tube-feedings since she was a kid. Now 14, she has it down to a science. She eats this way three times a day, and she takes her equipment with her everywhere, plus the formula and water to mix.

Amelia reminds herself not to let eosinophilic esophagitis hold her back from living the life she’s dreamed of living. “It’s part of you, but it doesn’t control you. It’s not who you are,” Amelia said.

Going out—whether to school, on a field trip, to a friend’s house or on vacation—requires planning. If she goes to a party or sleepover, she brings a can of olives or a sweet potato in case she gets hungry. Sometimes, of course, she chooses to forgo events if she decides that they’re not worth the effort.

“We never tell them they can’t do anything,” Julie said. “We’ve tube-fed Amelia while hiking. But they definitely analyze situations ahead of time, which most kids don’t have to think about. These kids are very responsible and have to grow up quickly.”

To learn more about how Celgene is committed to supporting research for rare diseases, read Supporting Research to Find Cures for Rare Diseases.

While understanding the impact of myelodysplastic syndromes (MDS) on the lives of people diagnosed with these blood cancers can help inform their care, assessments of quality of life in MDS have been, for the most part, lacking.

But a recent survey commissioned by the MDS Foundation, Inc. is helping to fill that gap, to shed some much-needed light on the experience of patients and their caregivers. According to the results, many people with MDS surveyed said that fatigue had a significant impact on their daily lives.

“The number one complaint that we hear, by far, from patients with MDS is that they don’t have the energy to do the things that make them feel like they’re living,” said Tracey Iraca, executive director of the MDS Foundation, which is raising awareness of quality-of-life issues during this year’s MDS World Awareness Day. “There are so many little things we take for granted that these people struggle with.”

A Closer Look at the MDS Symptom of Fatigue

Tracey Iraca

TRACEY IRACA, EXECUTIVE DIRECTOR OF THE MDS FOUNDATION, INC., BELIEVES A BETTER UNDERSTANDING OF HOW MYELODYSPLASTIC SYNDROMES AFFECT PATIENT LIVES IS THE FIRST STEP TOWARDS IMPROVING THE MANAGEMENT OF THE DISEASE.

The fatigue and tiredness that people with MDS experience interferes with their daily activities, according to the survey. Patients surveyed reported that they often struggled with tasks such as cooking, cleaning, shopping, climbing stairs and taking care of their pets. Several respondents said that they relied on other people to complete many of those chores.

“My house is not nearly as clean since [I was diagnosed with] MDS,” one person responded. “I am exhausted a lot of the time. I can only work short times, and I have to sit down—then I usually fall asleep.”

Some people reported feeling tired all day, every day, while others only experienced exhaustion in the afternoon. Some also said that naps in the afternoon had become a necessity in their everyday life.

Fatigue drains people with MDS not only physically but emotionally, according to the survey. People with MDS reported losing patience with themselves and worrying about their loss of independence. Several also said they experienced feelings of isolation and loneliness from not being able to visit their family and friends.

Why Fatigue Is a Symptom of Myelodysplastic Syndrome

It didn’t surprise Iraca that fatigue was of significant concern for people with MDS. She has heard it dozens of times over the past decade at the Foundation. And she understands why.

In MDS, the bone marrow doesn’t produce enough healthy red blood cells, which transport oxygen to different cells and tissues. Young red blood cells are then inhibited from properly maturing, caused by what is known as erythroid maturation defects.

“The normal development of all blood cells is a complex process that relies on both stem cells and the environment within the bone marrow,” explained Sandra Kurtin, board member of the MDS Foundation, assistant professor of clinical medicine and assistant professor of nursing, The University of Arizona Cancer Center. “This process goes awry in MDS due to a variety of issues.”

As a result of this ineffective development of red blood cells, up to 90 percent of people with MDS have low red blood cell counts, a condition known as anemia. Without enough healthy red blood cells to transport oxygen, it leaves people feeling continuously tired and weak throughout the day.

“Patients are becoming much more aware of what’s happening—they are learning to talk with their doctor about their fatigue and other symptoms of anemia.”

Managing MDS Linked Anemia

Understanding how MDS affects the daily lives of people is the first step toward improving care for the thousands living with this disease. When people with MDS, doctors and caregivers discuss the complete patient experience, they can address what matters most.

“Patients are becoming much more aware of what’s happening—they are learning to talk with their doctor about their fatigue and other symptoms of anemia,” Iraca noted. “We want to educate people to identify these symptoms earlier on so that they can get treatment sooner for anemia.”

People with MDS may receive red transfusions to raise their low blood counts and antibiotics to prevent or fight infections. Some people may also receive a bone marrow transplant, chemotherapy, or other treatment options. Iraca is hopeful that research will help us learn more about the disease and how to treat it.

“Researchers are working to identify genetic defects in MDS so that they can develop therapies to target them,” Iraca said. “The research that’s happening now makes us hopeful.”

To learn about the high unmet need for people with MDS, read “Why I Advocate for People with Myelodysplastic Syndromes.”

What’s on the outside can often distract us from what’s happening on the inside. For people with plaque psoriasis, that can mean treating their outer symptoms, but sometimes their treatments aren’t addressing the deeper problem within.

On this year’s World Psoriasis Day (October 29), it’s time to gain a better understanding of psoriasis: an autoimmune condition that causes an overactive immune response. It’s this immune response that causes the rapid growth of skin cells, leading to red, raised, itchy and scaly patches. By understanding this, people with psoriasis can better understand all of their possible treatment options.

 
To learn more about plaque psoriasis and available treatment categories, visit DeeperLevelPSO.com

Never judge a book by its cover: for TV host and fashion journalist Louise Roe and the millions of people living with psoriasis in the United States, it is more important than ever to understand this chronic condition.

Roe has teamed up with Celgene to launch INSIDE PERSPECTIVE, a campaign that aims to raise awareness about plaque psoriasis – an autoimmune condition that appears on the surface of the skin but starts inside the body.

While working at a fashion magazine in London at the age of 25, Roe was diagnosed with plaque psoriasis. Initially, she struggled with the diagnosis and managing the condition – planning her wardrobe and work events around hiding plaques on her skin.

“It was quite tough for me at first given the fashion industry is very focused on outward appearances,” said Roe. “At times, when the symptoms were too severe to hide, I canceled plans and social events – it definitely affected my confidence and my life in general.”

After working with her dermatologist, she was able to better understand plaque psoriasis and found ways to help manage the symptoms, all while building a successful fashion career as a journalist, author and blogger. Because of her personal experiences with her condition, Louise is speaking out to further educate the psoriasis community to treat the condition from within.

Through INSIDE PERSPECTIVE, Roe also had the opportunity to swap worlds for a day with Alycia, one of her fans who lives with moderate to severe plaque psoriasis. Their experiences are chronicled in an inspiring video where they share heartfelt insights about living with the condition, as well as the importance of looking beneath the surface and embracing who they are both inside and out. The full story and video can be viewed at www.PsOPerspective.com.

“What I’ve learned through this experience is that there’s always more to the story,” said Roe. “By opening up about my experience, I hope the campaign will help inspire and empower others.”

Louise is one of the estimated 7.5 million people in the United States living with plaque psoriasis—an autoimmune disease that appears on the skin as red, itchy patches that starts inside the body. Though often seen as a skin condition, plaque psoriasis can have both a physical and an emotional impact on those living with it.

To learn more about the INSIDE PERSPECTIVE campaign and Louise’s personal story, visit www.PsOPerspective.com.