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Most people have never heard of Behçet’s disease a painful, chronic condition that causes sores in the mouth and elsewhere on the body. Since only 16,000 to 20,000 people in the United States are affected by this condition, that’s hardly surprising. But for those suffering in silence, it’s important to know that, while there is no cure, diagnosis and treatment can help manage symptoms.

The diagnosis is based on the combination of clinical findings, and most doctor may not be very familiar with the condition and its symptoms as it is so uncommon in the United States many patients face significant delays in getting properly diagnosed and treated. One study suggested an average of nearly three years to diagnosis for patients with Behçet’s disease.

Knowing the signs and symptoms is essential to managing the disease. As part of this year’s Behçet’s Disease Awareness Day (May 20), we’re highlighting the five most common signs and symptoms that may develop as the disease progresses, with the hope that more patients can take control of their condition by talking to their doctor and getting treated as soon as possible.

Mouth Sores

Mouth sores are often the first sign of Behçet’s and occur in almost everyone with the disease. These painful ulcers, which can appear anywhere in the mouth, including the lips, tongue and cheek lining, look like common canker sores but can be far more abundant. Patients have reported dealing with multiple mouth ulcers at a time. Not surprisingly, they can make eating, drinking and even speaking difficult. These sores usually heal within a week or two without scarring but often return.

Genital Sores

Appearing in about 75 percent of people with Behçet’s disease, genital sores can occur almost anywhere in the groin area. These painful ulcers tend to be larger and deeper than mouth sores and, as a result, can lead to scarring. These sores will typically heal within two to four weeks but recur. While genital sores are not contagious, they can make sexual intercourse painful. Doctors can misdiagnose genital sores associated with Behçet’s disease as herpes.

Skin Sores

Between 60 and 90 percent of people with Behçet’s disease experience skin lesions beyond the mouth and genital areas. These lesions can manifest anywhere on the body as painful acne-like bumps or on the legs, arms, face and neck as red, tender nodules called erythema nodosum. These lesions typically heal within two to three weeks but, like mouth and genital ulcers, frequently return.

Eye Inflammation

More than half of people with Behçet’s disease experience a condition called uveitis, an inflammation of the eye that can result in pain, redness, blurry vision and increased sensitivity to light. Eye inflammation due to Behçet’s happens more commonly in younger people and men. While eye inflammation can be the first sign of Behçet’s in some patients, it may not appear until years later for others. If left untreated, repeated recurrences can lead to vision loss or blindness.

Joint Pain and Swelling

Joint diseases such as arthritis and spondylitis affect 50 percent of patients with Behçet’s disease, resulting in pain, swelling and stiffness in the knees, ankles, wrists and elbows. Spondylitis can cause pain in the low back or buttock. Joint pain and swelling can make it difficult to move and perform everyday tasks. Although bouts of joint pain and swelling typically last about days to weeks, as with most of the common symptoms of Behçet’s, it often recurs. Permanent joint damage, however, is rare.

Beyond these five most common symptoms, Behçet’s disease can affect the brain and spinal cord, gastrointestinal tract, large blood vessels, heart, lungs and kidneys. If you have Behçet’s and are experiencing a flare up of either a recurring or new symptom, consult with your doctor.

To learn more about the need for new treatment options for Behçet’s disease, read “Behçet’s Disease: The Key to a Breakthrough Is Medical Innovation.”

 

While some brides-to-be spend the week before their big day worrying about the weather or fitting into their dress, Danielle Kroft was dealing with a flare-up of her ulcerative colitis (UC). And a wedding dress wasn’t exactly going to make the situation easier.

“I couldn’t imagine being stuck in that dress for nine hours,” Kroft recalled. “So I was in my doctor’s office begging him to give me anything and everything to get it under control.”

This is what life is like for more than 900,000 people in the United States living with UC, an unpredictable inflammatory bowel disease (IBD) with symptoms that come and go over time. Some patients go years without symptoms; others have frequent flare-ups. In a survey, almost two-thirds of patients feel like UC controls their lives.

While more people are being diagnosed with IBD, Kroft believes that there is hope to accepting and managing the chronic disease. She has been reluctant to talk about her UC but is sharing her story for this year’s World IBD Day (May 19) to raise awareness so others can learn to better manage their disease.

A WEEK BEFORE HER WEDDING DAY, DANIELLE KROFT HAD A FLARE-UP OF HER ULCERATIVE COLITIS THAT THREATENED HER PLANS. PHOTO CREDIT: TARA WILEY PHOTOGRAPHY

A WEEK BEFORE HER WEDDING DAY, DANIELLE KROFT HAD A FLARE-UP OF HER ULCERATIVE COLITIS THAT THREATENED HER PLANS. PHOTO CREDIT: TARA WILEY PHOTOGRAPHY

Dinner Table Conversation Non-starters

When Kroft began noticing blood in her stool and experiencing abdominal pain at the age of 14, she didn’t tell anyone at first, thinking—or maybe hoping—that it would go away on its own. After all, the symptoms are hardly appropriate for the dinner table. But as the symptoms continued, Kroft eventually confided in her mother, who scheduled a doctor’s appointment. Five months, multiple doctor visits and a colonoscopy later, she was diagnosed.

“When you are 14, you don’t know what symptoms you should be watching for,” Kroft said. “Part of the reason that it took so many months to be diagnosed with UC was that I wasn’t sharing all the information about my symptoms with my doctors.”

This experience is common; in a survey, 45 percent of patients with UC regret not sharing more information with their doctors during visits. UC is most frequently diagnosed between the ages of 15 and 30, when patients may feel self-conscious talking about symptoms such as bloody stools, diarrhea and urgent needs to use the toilet.

When Kroft’s sister was diagnosed a couple of years later—genetic factors are thought to play a role in the disease—Kroft felt like she had someone close to her who could relate. But she also learned first-hand that no two people with UC have the same experience.

“Our food triggers, for example, are very different,” Kroft said. “I can eat bananas, but they upset her abdomen. I don’t do well with pancakes, but for her, pancakes aren’t a problem. And I really like pancakes.”

When you have a chronic illness, you need to take your medicine and build in time for blood work and doctor visits.

Things Only Got Harder

Being diagnosed with UC was just the start of Kroft’s lifelong struggle to control the disease, which is the best that she can hope for with no current cure. Instead of worrying about what shoes she was going to wear to school, Kroft had to focus on taking her medication every day or risk getting sick.

Sticking with her treatment plan was not easy. At one point, she was taking 26 pills a day—a mix of over-the-counter and prescription medications and supplements. UC treatment remains a trial-and-error process, and her first few medications didn’t work out. Her treatment plans have included enemas and foams that had to be administered rectally, which she recalls was as uncomfortable as it was embarrassing.

Things only got harder in college. Waking up at 4 a.m. each day for crew practice and the logistics of taking her medications stressed her out. “Where are you going to lay down to take an enema when you’re living in a dorm? Ask your roommate to leave because you have to do that? No way.”

At one point during her sophomore year, she had a month without any symptoms and convinced herself that she didn’t need her medication anymore. She stopped her treatment, which led to a really bad flare-up.

“I broke down emotionally at that point,” Kroft said. “I was young and didn’t take it as seriously as I should have. I didn’t make it a priority.”

AFTER TEN YEARS OF TRYING DIFFERENT THERAPIES, KROFT AND HER DOCTOR FINALLY FOUND A TREATMENT PLAN THAT HELPS HER MANAGE HER UC SYMPTOMS.

AFTER TEN YEARS OF TRYING DIFFERENT THERAPIES, KROFT AND HER DOCTOR FINALLY FOUND A TREATMENT PLAN THAT HELPS HER MANAGE HER UC SYMPTOMS.

Talking Poop

About ten years, multiple medications later, Kroft has finally found a treatment plan that works for her. She also landed a job she loves in public relations and married her high school sweetheart.

She still feels the need to be close to a bathroom during conference calls or while commuting. And she understands that’s always going to be a part of her life. For the most part, she’s feeling well.

“The biggest thing I have realized is that you need to take care of yourself,” Kroft said. “When you have a chronic illness, you need to take your medicine and build in time for blood work and doctor visits.”

Taking good care of yourself means learning more about your chronic disease and getting support, according to Kroft. She wishes she had asked her doctor more questions about the condition and had spent time reading the Crohn’s & Colitis Foundation’s website when she was first diagnosed. Recently, Kroft has begun attending seminars from the Foundation, where she has learned from other patients and experts. She’s presently most concerned with learning the effects, if any, of UC and its treatments on pregnancy.

Over the past 14 years, Kroft has also learned to be more open with people about her disease. She can’t believe she waited six years before thoroughly explaining what living with UC is like to her now-husband. “People are a lot more willing to talk about poop issues and cut you some slack than you might think,” Kroft said.

To learn how combining endoscopic and microscopic analyses is providing a more complete picture of UC, read “A Closer Look at Mucosal Healing in Ulcerative Colitis.”

 

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When Ahmet Varoğlu was diagnosed with beta-thalassemia at the age of four, his family knew nothing about the disease. But they would soon learn that it is a rare, inherited blood disorder for which there is no cure. Now 49, Varoğlu serves as President of the North Cyprus Thalassaemia Society and Vice President of the Evrensel Hasta Haklari Derneği (Universal Patient Rights Association) in Northern Cyprus. He is dedicated to sharing his story to help improve understanding and increase patient access to disease education and other resources. This International Thalassemia Day (May 8), Varoğlu reflects on his experience and the challenges still facing patients today.

Beta-thalassemia is caused by a genetic defect in the production of hemoglobin, a protein that carries oxygen to red blood cells throughout the body. The defect leads to fewer and abnormal red blood cells, which can cause chronic anemia. The treatment of anemia often requires frequent blood transfusions, which are associated with serious health risks such as iron overload and diabetes.

The years following his initial diagnosis were difficult. “No one knew how to treat the disease,” he said. “There were no medications or specialized doctors. We didn’t even have a hospital to go to for treatment.”

As a result, Varoğlu and his family had to search for answers on their own after his diagnosis. Not until the 1970s were pilot programs launched in Cyprus to drive public awareness, education and prevention efforts. Patients in Northern Cyprus also banded together with family members caring for those impacted by the disease to form a local thalassemia patient society. According to Varoğlu, since its development in 1978, the society has been instrumental in helping patients make informed treatment decisions, providing access to healthcare professionals and educating physicians about beta-thalassemia.

Today, national education and prevention programs for beta-thalassemia can be found in several countries, including Cyprus, as well as Greece, Iran, Thailand and the UK. These programs provide information about risk factors, offer detection services to identify carriers and implement measures to reduce the spread of disease. Local organizations together with larger advocacy groups, such as the Thalassemia International Federation, are also helping to improve disease awareness and patient care. However, more needs to be done.

Current treatment approaches help to mitigate symptoms but do little to target the cause of the disease. With numerous doctors’ appointments and a need for ongoing blood transfusions, treatment requires a significant time commitment and can be costly. In addition, life-altering complications such as heart disease, bone and liver abnormalities and growth deficiencies often accompany beta-thalassemia. Patients and their loved ones have to accept that the disease will require life-long management.

Varoğlu has come to terms with the fact that beta-thalassemia will forever be a part of his life, but he’s hopeful that research efforts will improve care in the future.

“I can’t say that we are in a bad position. There have been many improvements within the past few years. But there is still no cure,” Varoğlu said. “Being informed, sharing resources and asking questions are critical for improving the future of patient care. Thankfully, research is ongoing.”

Watch this video to learn more Ahmet Varoğu’s story and hear his hope for future beta-thalassemia patients.

By Zeba Khan, Vice President of Corporate Responsibility, Celgene

John Chahilu is a proud Kenyan who is living with multiple myeloma. John could have easily been another statistic—another preventable death resulting from cancer and other noncommunicable diseases (NCDs). Delayed cancer diagnoses and poor-quality treatment are all too common in low- and middle-income countries like Kenya. However, increasingly, multi-sector partnerships are taking action so that patients, like John, can have better health outcomes.

John is being treated by physicians at the Academic Model Providing Access to Healthcare (AMPATH) program and Moi University Referral and Treatment Hospital, which are working in partnership with the Kenyan Ministry of Health to create equitable access to health care.

The Ministry is currently advancing universal coverage through a National Health Insurance Scheme and a corresponding population health model that operates through a network of rural clinics focused on the provision of quality primary care and a strong referral network for more advanced or specialty cases.

AMPATH’s Oncology Institute has worked to improve diagnostic and treatment training for multiple myeloma. In 2010, physicians at AMPATH were surprised to have diagnosed five patients with myeloma. With more awareness and better diagnostics, that number has grown steadily to 34 new patients in 2012 to 60 new patients in 2017. The expected number of new multiple myeloma diagnoses in the country is about 800 per year.

ZEBA KHAN, VICE PRESIDENT OF CORPORATE RESPONSIBILITY AT CELGENE, PARTICIPATED IN A PANEL DISCUSSION ON “ENGAGING ACROSS SECTORS AND DISCIPLINES TO ADDRESS NCDS” DURING AN ACCESS ACCELERATED-HOSTED EVENT IN NAIROBI, KENYA.

ZEBA KHAN, VICE PRESIDENT OF CORPORATE RESPONSIBILITY AT CELGENE, PARTICIPATed IN A PANEL DISCUSSION ON “ENGAGING ACROSS SECTORS AND DISCIPLINES TO ADDRESS NCDs” DURING AN ACCESS ACCELERATED-HOSTED EVENT IN NAIROBI, KENYA.

In late March, in Nairobi, Kenya, John participated in a panel discussion on engaging across sectors and disciplines to address NCDs. John kicked off the panel with his own patient story, an example of the power of cross-sector collaborations to create new possibilities for patients.

The discussion was part of a larger meeting hosted by Access Accelerated, an initiative that has brought together over 20 biopharmaceutical companies to tackle the challenges of NCDs. The meeting brought together representatives from patient groups, civil society, government and the private sector to discuss the specific challenges of addressing NCDs in Kenya, as well as current and potential sustainable solutions.

The Access Accelerated meeting extended an important discussion that began earlier in the week at an event convened by the World Bank and the Kenyan Ministry of Health in which NCD stakeholders discussed strategies for realigning NCDs with Kenya’s Universal Health Coverage agenda.

Collaboration is key to making measurable progress on NCDs. We are working across health systems and sectors to advance sustainable solutions for patients.

John’s story and the discussion that followed emphasized how organizations across all parts of the health care sector—private and public, large and small—can help in the fight against NCDs, in Kenya and elsewhere, by working together.

This is the aim of Celgene’s partnership with AMPATH Oncology. Together, we have created the first and only multiple myeloma program in Kenya that educates patients and healthcare professionals. Through our continuing education programs for oncologists, we have helped to improve diagnostics so that patients are more likely to get accurate diagnoses and consequently, earlier treatment options.

John is one of the approximately 100 Kenyans with multiple myeloma who are seeing specialists through the AMPATH program. Hearing his story was a gratifying reminder of how global health partnerships are making an impact on patients’ lives.

Our partnership with AMPATH works within the current healthcare system to address a locally identified need and to improve multiple myeloma care in Kenya. Through the AMPATH program, Celgene works with Moi University Teaching and Referral Hospital in Eldoret, Kenya, providing additional training for oncologists who are already treating patients so that they can provide better care. This complementary approach was emphasized by several participants during the panel session.

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.

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.

At the meeting, it was encouraging to see so many stakeholders from different sectors come together and learn from one another. For example, the panel discussion featured patients, healthcare professionals, biopharmaceutical companies, non-profit organizations and Kenya’s Ministry of Health.

To meet the challenges of noncommunicable diseases in Kenya, and the rest of the world, we need to continue listening to diverse perspectives from all sectors and to find ways to complement and enhance what others are already doing.

As Celgene continues to support global health initiatives, patients will remain at the heart of everything we do. Our vision is for many more patients to have stories like John’s, in which they receive a timely diagnosis and appropriate treatments, regardless of where they live.

To learn more about how partnerships like Access Accelerated are strengthening the global healthcare system’s capacity for cancer care, read “Burden of Cancer Growing in Developing Countries.”

When she was diagnosed with metastatic breast cancer in 2006, Margaret Zuccotti had just given birth a month prior and was also caring for her other two children who were aged three and six at the time. With the stress of caring for her children and researching her treatment options at the same time, much of that time in her life remains a blur. But she does recall trying hard not to tell her kids about her breast cancer diagnosis until after the treatment plan was determined.

“If I had a chance to do it again, I’m not sure I would have done it that way,” Zuccotti said. “All children, even little ones like my three-year-old, pick up on stress and emotional changes in the family. They know something is going on. I think it’s important for a mother to share her breast cancer diagnosis with her kids.”

Being diagnosed with metastatic breast cancer while parenting young children is becoming more common; the number of women aged 25 to 39 diagnosed with metastatic breast cancer has increased 2.1 percent each year on average between 1976 and 2009. Zuccotti reflects on how she approached the difficult discussion with her children about her breast cancer diagnosis, so that other mothers can learn from her experience.

BREAST CANCER SURVIVOR MARGARET ZUCCOTTI BELIEVES THAT IT’S IMPORTANT FOR MOTHERS WHO ARE DIAGNOSED WITH BREAST CANCER TO LET THEIR KIDS KNOW WHAT IS HAPPENING THROUGHOUT THE JOURNEY.

BREAST CANCER SURVIVOR MARGARET ZUCCOTTI BELIEVES THAT IT’S IMPORTANT FOR MOTHERS WHO ARE DIAGNOSED WITH BREAST CANCER TO LET THEIR KIDS KNOW WHAT IS HAPPENING THROUGHOUT THE JOURNEY.

Finding the Right Words

When her treatment plan was confirmed, Zuccotti decided to tell her kids that she was sick and would have to take a lot of medicine to get better. She wanted to make sure that they knew to come to her and her husband for information and with any questions. That way they could address their concerns and find the answers to their questions together.

As a former school teacher, Zuccotti understood that books could help her children with this stressful situation and feel more at ease with any feelings of anger and sadness. Furthermore, she wanted to create a safe environment for them to share their concerns by holding them in her lap while reading together.

She found several cancer-related books. One book with a picture of a woman sitting in an infusion chair with an intravenous line helped her explain to her children what her treatment would look like.

Above all else, Zuccotti believed it was crucial to reassure her children that she loved them very much and that they were going to be okay. “It was important for me to say that ‘Mommy has cancer, but you’re not going to catch it,’” she said. “If kids know others who have died or suffered from cancer, you can tell them that everyone’s disease is different and explain more about yours.”

I think it’s important for a mother to share her breast cancer diagnosis with her kids.

An Ongoing Story

When Zuccotti told her six-year-old about her breast cancer, he said, “I understand. I don’t feel great today either,” and hopped off his bed and began to play again.

“Kids most likely won’t get it the first time around,” Zuccotti said. “It can’t be a one-and-done conversation. It’s essential you talk about what’s going on throughout the process and prepare them for anything that might change, especially things that may change regarding physical appearance.”

She told her kids her hair would begin to fall out because of the medicine and that she would shave her head when they were at school. Her three-year-old asked if she could touch her bald head, but her six-year-old just wanted her to put her scarf back on.

Before her mastectomy, Zuccotti warned her kids that she wouldn’t be able to hug them for two weeks. Together, they created a new ritual to share their love: the pinkie hug.

While she kept the conversation going throughout her treatment, Zuccotti didn’t share everything. She tried to focus on what she thought was appropriate based on their ages.

AS HER KIDS HAVE GROWN, THEY BETTER UNDERSTAND WHAT THEIR MOTHER HAS GONE THROUGH. THEY JOIN HER IN VOLUNTEER WORK WITH LIVING BEYOND BREAST CANCER, PARTICIPATING IN EVENTS SUCH AS THE ANNUAL YOGA FUNDRAISER.

AS HER KIDS HAVE GROWN, THEY BETTER UNDERSTAND WHAT THEIR MOTHER HAS GONE THROUGH. THEY JOIN HER IN VOLUNTEER WORK WITH LIVING BEYOND BREAST CANCER, PARTICIPATING IN EVENTS SUCH AS THE ANNUAL YOGA FUNDRAISER. 

Tell the Other Adults in the Room

Beyond sitting down and explaining her breast cancer diagnosis with her children, Zuccotti also told a few teachers and counselors at her children’s school and summer camp. She told her children whom she spoke to and encouraged them to reach out to those adults if they needed to talk with someone about what was going on at home.

“You don’t have to tell everything to people, but you may want to let the school know,” Zuccotti said. “If your wonderful child turns into the most disruptive one in the class, it’s pretty easy to figure out why.”

When sharing details with other adults, she made sure to tell them what her kids did and didn’t know, so they never inadvertently brought up something she might not have been ready to discuss.

As her kids have grown, they better understand what their mother has gone through. They join her in volunteer work with Living Beyond Breast Cancer, participating in events such as the organization’s annual yoga fundraiser. “The yoga on the steps of the Philadelphia Museum of Art event has been a cool way to fold my kids into what’s going on,” Zuccotti said.

To help facilitate conversations about living with breast cancer such as the ones that Zuccotti had with her children, Celgene has launched the Magic Tree mobile app with input from patient advocacy groups and clinical experts.They have also become pillars of support for their friends when a family member has been diagnosed with cancer. Her oldest child, now 17, has provided comfort to three classmates during the difficult times when their mothers were diagnosed with breast cancer. “It made him feel helpful,” she said. “They really helped keep me going when I was being treated, and it’s nice to see them do the same for others as well.”

To help facilitate conversations about living with breast cancer such as the ones that Zuccotti had with her children, Celgene has launched the Magic Tree mobile app with input from patient advocacy groups and clinical experts. The Magic Tree is an educational interactive app with videos and activities designed to help families and their children (ages 5 to 8) to have meaningful and open discussions about a breast cancer diagnosis. The app is available for download in the United States on both Apple and Android devices.

 

Since Amy Wolverton was diagnosed with multiple myeloma in 2008, she has been on numerous chemotherapy regimens. When one treatment stopped working, her doctor would recommend another. Sometimes the new treatment would be administered intravenously (IV); other times it would be a pill. Like many cancer patients, Amy has faced hurdles with insurance coverage for her cancer treatment.

During this year’s Multiple Myeloma Action Month, Wolverton wants people to know that some insurers are charging patients with cancer more for oral therapies (pills) than for IV therapies due to differences in how the two forms are covered. Intravenous chemotherapy falls under medical benefits, but oral cancer therapies are included in prescription medication benefits, which have much higher cost sharing for patients. As a result, some patients are forced to make treatment decisions based on their out-of-pocket costs rather than what is best for their health and survival.

“It makes little sense to me,” Wolverton said. “When you add up the medical supplies, doctors’ and nursing costs, facility overhead, and costs for complications such as infections from IVs, the insurance companies could be paying more for the IV than they pay for the pills.”

AMY WOLVERTON’S (CENTER) PARENTS, JANICE AND LEE BURKHEAD, HAVE BEEN SUPPORTING HER THROUGHOUT HER JOURNEY WITH MULTIPLE MYELOMA TREATMENT.

AMY WOLVERTON’S (CENTER) PARENTS, JANICE AND LEE BURKHEAD, HAVE BEEN SUPPORTING HER THROUGHOUT HER JOURNEY WITH MULTIPLE MYELOMA TREATMENT.

The Rise of Oral Chemotherapy

Over the past decade, Wolverton has seen the progress made in multiple myeloma and the increased availability of oral therapies. In 2017, nine of the 16 cancer treatments approved by the U.S. Food and Drug Administration were oral therapies. For many oral therapies, there is no IV equivalent. And, for some patients with blood cancer, a pill may be the only option.

When she was on an oral cancer treatment, Wolverton took a pill at home each morning and continued her routine, working full-time as a corporate government affairs executive in the telecommunications industry and spending time with friends and family, including with her mother Janice, her father Lee, her brother Jason, sister-in-law Carla, and her nephew Dylan, who is now 10.

Like many patients with multiple myeloma, Wolverton has had to find new therapies as each consecutive treatment stopped working for her. “It’s frightening and frustrating when a treatment stops working,” Wolverton said. “But, even though we have yet to find a more curative treatment for myeloma, we remain hopeful with all the new treatments, both oral and IV, that have been approved.”

I’m doing everything I can to help others with multiple myeloma and other cancers get the best possible treatment for themselves.

Oral Parity Protects Patients

Wolverton strongly believes that all patients with multiple myeloma should have equal access to all treatments, regardless of how they are taken. Most state lawmakers agree, and they have taken action.

Since 2008, the year that Wolverton was diagnosed, 43 states and the District of Columbia have enacted oral parity laws, which make the patient’s financial responsibility for covered medications equal for IV and oral therapies. Meanwhile, the Cancer Drug Coverage Act  has been introduced in the U.S. House of Representatives to protect the millions of people with plans that are not state regulated, including most plans offered by large employers.

AMY WOLVERTON AND HER NEPHEW DYLAN TAKE A SELFIE TOGETHER.

AMY WOLVERTON AND HER NEPHEW DYLAN TAKE A SELFIE TOGETHER.

With her background in legislative issues, Wolverton knows how those laws can help patients. She continues to advocate for these policies, joining the International Myeloma Foundation in its activities. She believes it’s her job to speak up for everyone who struggles to get affordable access to oral cancer treatments.

Over the years, Wolverton has switched insurance companies and experienced changes in out-of-pocket treatment costs. But, she is doing well on her current medication and remains optimistic about her future. “I’m just so grateful to be here,” she said. “And I’m doing everything I can to help others with multiple myeloma and other cancers get the best possible treatment for themselves.” 

To learn about how Congress can act to protect Americans from outdated insurance policies, read “Why Federal Oral Parity Legislation Is Urgently Needed Today.”

By Robin Levy, Senior Director Public Policy and Advocacy at the International Myeloma Foundation (IMF)

When a patient is diagnosed with cancer, the physical and emotional aspects of treatment make life difficult. Many patients are surprised to find their insurance may not cover all their treatment options equally, adding more stress to their situation. While the copay for an intravenous (IV) cancer treatment can be as little as $100 a month, insurers may charge patients thousands for a medication that comes in pill form. More than 91 million Americans remain exposed to this glaring flaw in their health insurance plans.

ROBIN LEVY FROM THE INTERNATIONAL MYELOMA FOUNDATION BELIEVES THAT THE LATEST VERSION OF FEDERAL ORAL PARITY LEGISLATION HAS THE BEST CHANCE YET OF PASSING CONGRESS THAN PREVIOUS VERSIONS.

ROBIN LEVY FROM THE INTERNATIONAL MYELOMA FOUNDATION BELIEVES THAT THE LATEST VERSION OF FEDERAL ORAL PARITY LEGISLATION HAS THE BEST CHANCE YET OF PASSING CONGRESS THAN PREVIOUS VERSIONS.

This insurance design is no way for us to treat patients with cancer such as multiple myeloma. That’s why, during this year’s Multiple Myeloma Action Month in March, the International Myeloma Foundation (IMF) has launched the Coalition to Improve Access to Cancer Care to advocate for common sense state and federal oral parity policies that will protect patients with multiple myeloma and other cancers from unequal coverage.

The IMF has been working hard for the past decade to get state and federal oral parity bills passed. In my role as senior director of public policy and advocacy at the IMF, I have seen firsthand the progress that has been made in multiple myeloma treatment, including the addition of oral therapies.

So far, oral parity laws have been passed in 43 states and the District of Columbia, and they are working. In states that have enacted parity legislation, the proportion of prescriptions filled with $0 copays for oral cancer therapies has surged from 15 percent to 53 percent, according to a recent study. With the high cost-sharing penalties for those treatments eliminated, the use of oral anti-cancer medications has increased by 22 percent.

The same study also found that state oral parity laws did not lower costs for all patients. About 61 percent of Americans have health insurance that is funded by their employer and, therefore, is not governed by these state laws, which regulate only individual and small business plans.3 The only way to protect all patients with multiple myeloma and other cancers is through federal legislation.

If there is one thing that everyone in Congress can agree upon, it is getting patients with cancer affordable access to the most appropriate care possible.

Last year, the Cancer Drug Parity Act was introduced in Congress. With bipartisan support from 140 cosponsors equally divided between Republicans and Democrats, this bill represents, in my opinion, our best chance yet to get federal oral parity legislation passed. If there is one thing that everyone in Congress can agree upon, it is getting patients with cancer affordable access to the most appropriate care possible.

Despite this progress, some myths persist around oral parity. For instance, some critics argue that covering oral medications at the same level as IV therapy will increase the cost of healthcare and insurance premiums, but the truth is that oral parity laws have not significantly increased either. In a recent study, researchers found that parity laws have not led to any additional costs for insurers at all.

Oral Parity Map: Oral Therapy Parity Laws Are Needed at the State and Federal Levels

Meanwhile, other people falsely assume that there is always an IV equivalent to oral medications. But in reality, some patients have no other option than the oral medication that their doctor has prescribed.

While we have a good deal of momentum on the latest federal oral parity bill, we cannot let up yet. We need the House Energy and Commerce committee to schedule a hearing and move this bill out of committee.

Our advocacy staff is frequently on Capitol Hill, but we need patients to take action as well. We need patients with multiple myeloma, survivors and their loved ones to help members of Congress understand why we need this bill. We need the multiple myeloma community to share their personal stories. We need more letters to the editor highlighting the need for oral parity legislation. These small actions can make a significant difference in getting Congress to act in the best interest of patients.

As medical innovation continues to pursue a goal to a cure for multiple myeloma, what good is a cure if patients do not have affordable access to it? And what good is insurance that does not protect patients with multiple myeloma from the cost of their treatment?

Congress should pass the Cancer Drug Parity Act, and it’s our job as advocates for the multiple myeloma community to explain how this can help our community.

To learn how you can advocate for oral parity legislation, visit the Coalition for Equal Cancer Access website.

One in every four people is affected by anemia, a condition that occurs when the body lacks enough healthy red blood cells. Red blood cells carry hemoglobin, a protein that transports oxygen throughout the body, ensuring the body has energy and can function properly. Symptoms may vary in severity and can be acute or chronic. Further, many patients present with chronic anemia as a result of other health conditions – cancer, autoimmune and inflammatory diseases, or blood or bone marrow disorders – which each come with their own challenges. For those with chronic anemia associated with other diseases, life after diagnosis often means adjusting to a new “normal.” Dizziness, trouble breathing and overall tiredness experienced by many with anemia may mean adjusting work schedules, changing exercise regimens, limiting social activities and generally slowing down.

Kathleen Weis, Chief Executive Officer of The Aplastic Anemia and MDS Awareness International Foundation, calls it the “elephant in the room.”

“Chronic anemia impacts a person’s daily activities. For many, it means not being able to do the things they used to – like going to work or helping around the house. Symptoms, fatigue in particular, can be debilitating,” Weis explained.

For patients, this may necessitate relinquishing aspects of independence. An increasing reliance on caregivers is one of the hardest transitions people living with chronic anemia face. It’s an entirely new learning process and is often coupled with the guilt of knowing there’s an added burden on family members and caregivers. Patients may even experience depression at one point or another.

“It’s a double whammy in terms of emotions. Both patients and caregivers are learning how to deal with the changes,” Weis said. “We put a lot of focus on mindfulness and positivity to help patients and their families through these challenges, in addition to educating about treatment. We believe in treating the body and mind together.”

This March marks the first ever Aplastic Anemia and MDS Awareness Month, an extension from the weeklong observance The Aplastic Anemia and MDS Awareness International Foundation has organized in previous years. Webinars and conferences throughout the month will offer learning opportunities on a wide variety of topics for patients, caregivers and healthcare providers.

Research is another core focus for the Foundation. Treatment options for patients with chronic anemia are limited, and the organization is trying to make sure researching new approaches is seen as a priority. One of the most common treatments is red blood cell transfusions; a process by which donated blood is infused into a patient’s bloodstream. Frequency of transfusions depends on disease severity, but some patients may need to be transfused as often as every two weeks. This is challenging as transfusions are cumbersome, costly and associated with risks.

“Frequent blood transfusions require numerous visits to the doctors, which can be inconvenient for both patients and their caregivers. We would like to see new treatments that not only improve patient outcomes but may also address current burdens,” said Weis.

Despite the challenges they face, Weis notes that the patients she meets are resilient. “They want you to know they are still very much moving forward and this thing – this disease – is just something they are dealing with each day.”

For more information about The Aplastic Anemia and MDS Awareness International Foundation or Aplastic Anemia and MDS Awareness Month, visit http://www.aamds.org/.

Last September, patient advocates finished a day of meetings with their members of Congress in Washington, D.C., by gathering around the Lincoln Memorial Reflecting Pool for the annual Lights of Hope event, during which they lit over 700 luminaries to honor of those who have been affected by cancer.

JOANN VOLK, A SENIOR RESEARCH FELLOW AT GEORGETOWN UNIVERSITY, BELIEVES THAT MEDICAL MANAGEMENT PROCESSES COULD BE SIMPLER FOR CANCER PATIENTS.

JOANN VOLK, A SENIOR RESEARCH FELLOW AT GEORGETOWN UNIVERSITY, BELIEVES THAT MEDICAL MANAGEMENT PROCESSES COULD BE SIMPLER FOR CANCER PATIENTS.

For the American Cancer Society Cancer Action Network (ACS CAN), organizing the event helps to make cancer a national priority. On February 4, we recognize World Cancer Day and look at the state of the disease. While health care policy reform has improved coverage for cancer patients over the past decade, much work remains, according to a recent ACS-CAN report.

JoAnn Volk, a senior research fellow at Georgetown University and one of the report’s authors, explains how medical management is affecting cancer care and why the healthcare ecosystem must work together to make it simpler, faster and more affordable for cancer patients to get the proper care.

Why are some cancer patients struggling to access proper care?

“For our report, we interviewed patient navigators who help people understand their health insurance. We found that not everything is smooth sailing for people living with cancer. Although the Affordable Care Act (ACA) has limited how much people pay out of pocket, cancer patients still pay plenty and reach that limit quickly.

“On top of those high out-of-pocket costs, patients are also facing medical management from their insurers more often. Oral and cutting-edge cancer therapies are increasingly being subject to tactics such as prior authorization and step therapy. These different tools put hurdles between patients and their doctor’s recommended treatment.”

Each plan has its own utilization management process, different criteria and different paperwork. It could be made uniform and simpler.

Why are newer and oral cancer therapies more likely to be subject to medical management?

“Health plans are singling these therapies out in prior authorization and step therapy policies primarily because of the cost of these treatments and often do not approve newer medications without further justification. There are more restrictions in accessing the high-cost medications regardless of the benefit to the patient. Sometimes the cutting-edge therapies were just not on the insurer’s radar or established within the plan. The insurer often will require a discussion with the prescribing doctor to understand the science behind the medication and why it would work for a particular patient.”

How do these medical management policies affect patients?

“The navigators work with the insurer to address their concerns with the prescribed medications and file an appeal where necessary. While it’s rare that a patient wouldn’t eventually get access to the prescribed therapy, the process of being denied a treatment, filing an appeal and working through the process takes time. For example, the prior authorization process can take from seven to 10 days, but sometimes they can take multiple weeks. It’s stressful for the patient and can affect their care depending on how the treatment was mapped out for them.”

How could policies help to make the process easier for patients?

“Medical management will be something that will be fixed legislatively. The ACA allows plans and insurers to use medical management to decide coverage limitations.

“But one thing that navigators pointed out was that each plan has its own utilization management process, different criteria and different paperwork. It could be made uniform and simpler, regardless of the insurer. Making uniform rules and paperwork for insurers and plans would make things run more smoothly for both doctors and insurers. Health plans with prior authorization and step therapy should have a clear process for appeals, which is something that could be fixed with legislation.”

Is there an opportunity for biopharmaceutical companies to work more closely with insurers to reduce out-of-pocket costs for patients?

“Assistance programs offered by biopharmaceutical companies have already been important tools for patients, according to the navigators we interviewed. But there’s always an opportunity for more partnerships to reduce the financial burden for cancer patients. If manufacturers and insurers work together to address out-of-pocket costs for patients, it would certainly make the process easier for patients and navigators.”

To learn more about policy proposals that can improve patients’ affordable access to effective treatments, read “Innovative Therapies Require Innovative Thinking to Ensure Access and Reduce Financial Burdens on Patients.”

 

Like many companies, Celgene strives to be a leader in corporate sustainability. Recently, Celgene was recognized as the highest ranked healthcare company, according to Newsweek’s 2017 U.S. Green Rankings. Notably, Celgene also ranked seventh in the top 10 of the 500 largest publicly traded U.S. companies, up 47 positions from last year.

ZEBA KHAN, VICE PRESIDENT OF CORPORATE RESPONSIBILITY AT CELGENE, IS HELPING TO DRIVE PROGRESS TOWARD CELGENE’S SUSTAINABILITY GOALS.

ZEBA KHAN, VICE PRESIDENT OF CORPORATE RESPONSIBILITY AT CELGENE, IS HELPING TO DRIVE PROGRESS TOWARD CELGENE’S SUSTAINABILITY GOALS.

The Newsweek Green Rankings is one of the most recognized environmental performance assessments of the world’s largest publicly traded companies. The rankings compare each company by industry group on their performance and commitments with respect to energy usage, greenhouse gas emissions and water use, among other factors.

“Celgene has had a long-standing commitment to sustainability practices and reducing its environmental footprint,” said Zeba Khan, Vice President of Corporate Responsibility at Celgene. “In 2016, the company went a step further by establishing quantifiable 2020 environmental goals. Our employees around the world are committed to achieving these targets and supporting the well-being of not only our patients, but also the planet.”

As we look toward the future, we will continue to focus on the science and strive for sustainability excellence.

Newsweek isn’t the only organization that has recognized Celgene for its corporate responsibility efforts. In 2017, Celgene ranked 13th on CR Magazine’s list of the Most Responsible Companies in the healthcare sector and was included in the FTSE4Good Index of companies that demonstrate strong environmental, social and governance practices.

Celgene’s continuing progress in environmental sustainability is the result of strong cross-functional commitment from the company’s Sustainability Committee and facilities operations team, which actively advocated for and guided the development of quantifiable environmental goals for 2020. These ambitious yet achievable targets include reducing the company’s carbon footprint by 20 percent, increasing the purchasing of renewable electricity by 15 percent and reducing water withdrawal and solid waste generation by 10 percent each.

IN 2017, CELGENE’S NEW BUILDING L RECEIVED LEADERSHIP ENERGY AND ENVIRONMENTAL DESIGN (LEED) GOLD CERTIFICATION FOR ITS GREEN BUILDING FEATURES.

IN 2017, CELGENE’S NEW BUILDING L RECEIVED LEADERSHIP ENERGY AND ENVIRONMENTAL DESIGN (LEED) GOLD CERTIFICATION FOR ITS GREEN BUILDING FEATURES.

“With these goals in place, we have specific and measurable objectives that provide us with a shared vision for environmental sustainability,” Khan said. “Sustainability is part of everything we do. As we look toward the future, we will continue to focus on Celgene’s patient-focused and science-based mission, while striving for continuing sustainability excellence.”

THE CELGENE 2017 CORPORATE RESPONSIBILITY REPORT HIGHLIGHTS THE COMPANY’S PROGRESS TOWARD ITS SUSTAINABILITY GOALS.

THE CELGENE 2017 CORPORATE RESPONSIBILITY REPORT HIGHLIGHTS THE COMPANY’S PROGRESS TOWARD ITS SUSTAINABILITY GOALS.

Celgene’s newest office space at the Summit, NJ headquarters is just one example of the progress toward the company’s sustainability goals; the building features efficient water fixtures, renewable energy sources and a rainwater collection system that filters rainwater for use in site landscaping and other activities. Last year, the new building’s green features were independently recognized with the Leadership Energy and Environmental Design (LEED) Gold certification.

Additionally, Celgene’s facilities operations team consistently chooses to purchase electricity from certified renewable energy sources. In 2017, more than 50 percent of Celgene’s electricity use was from renewable sources.

“Celgene’s commitment to sustainability is an important part of our commitment to patients,” said Khan. “When we promote a healthy environment, we improve the well-being of communities and patients – a responsibility we take seriously.”

To learn more about Celgene’s continued progress toward its sustainability goals, download the Celgene 2017 Corporate Responsibility report.