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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.

 

As people around the world are living longer, cancer rates are increasing.[i]  Parts of the world have responded to this with medical research and medical care, but in some countries with limited economic resources, health care systems are not well equipped to care for cancer patients. These countries are spread around the world in parts of Asia, Africa and Latin America. While many organizations have developed programs for cancer patients in these countries, this continues to be a problem. For instance, cancer was responsible for the death of 591,000 Africans in 2012 alone.[ii]

To address the gaps in cancer care in resource-constrained countries, Celgene has launched a grant program called Celgene Cancer Care Links™. The program is a joint effort of Celgene Global Health and Celgene Corporate Responsibility. Joseph Camardo, MD, Senior Vice President of Celgene Global Health and Corporate Affairs Medical Strategy, shares why he believes this program will help in improving global cancer care.

Joseph Camardo, MD, Senior Vice President of Celgene Global Health and Corporate Affairs Medical Strategy, Believes the Cancer Care Links Program Could Substantially Improve Global Cancer Care.

Joseph Camardo, MD, Senior Vice President of Celgene Global Health and Corporate Affairs Medical Strategy, Believes the Cancer Care Links Program Could Substantially Improve Global Cancer Care.

Why are there gaps in cancer care in these countries?

“First and foremost, resources are limited in many countries around the world which have competing budget priorities. Countries, such as Kenya and Uganda, have taken steps to build their healthcare systems but have had to devote much of their health care resources to problems that are more common than cancer, such as HIV, tuberculosis, and malaria. Cancer has also been less commonly diagnosed in some geographies due to multiple reasons, such as limited cancer expertise and historically lower life expectancy (cancer tends to be diagnosed at an older age). This is changing as cancer rates are rising because of improved longevity, awareness and detection.”

How will the Celgene Cancer Care Links program help?

“It will provide funding to local institutions and initiatives to enhance patient cancer care. We hope that these funds will allow local institutions to bring medical training and technology to patient care. Our aim is to help improve cancer care systems, so that cancer is diagnosed earlier when it’s easier to treat, doctors in areas far from medical centers have a place to refer cancer patients for treatment, and awareness of successful cancer treatments is heightened.”

What types of initiatives will be funded by the program?

“Progams will be considered in a wide range of areas. For example, funds may be used for oncology training programs for doctors, nurses and pharmacists. A training program may, for instance, focus on pharmacists learning how to mix and store cancer medications and accurately forecast demand. Funds may also be used to add medical staff, such as nurses, at cancer care clinics.”

“Other eligible programs may include general medical support for cancer patients. We recognize that many cancer patients will have other medical needs as well, including the infections that may be related to the cancer. Funds may also be used for cancer awareness and education programs. Cancer rates in developing countries are rising in part because of a rise in risk factors such as smoking. So some programs may be focused on counseling people on managing those risk factors.”

“We find it important that although organizations have been donating cancer medicine, it is widely recognized that, along with the medicine, a health system strengthening effort is also required and that is what our grant program is focused on.”

How will the program work?

“We will provide cancer centers with $100,000 grants that are renewable annually based on progess and impact of the programs. We aim to fund centers that have established partnerships and that have built up some cancer care capacity. We’re looking to strengthen existing institutions that already have partners but are seeking additional funding.”

Cancer care is an area of expertise for Celgene, and we have an opportunity to make a difference here.

What do you hope the program will accomplish?

“I’d like to see the majority of our programs lead to sustainable changes, such as ongoing training programs and improved survival rates. For example, 90 percent of people with metastatic breast cancer in the United States survive five years, but just 11 percent do in Gambia.[iii],[iv] And if our program works in successfully improving cancer care, the centers we’ve funded might be eligible for grants from other organizations, including their government.”

How does this program build on Celgene’s other efforts?

“As part of Celgene’s commitment to Global Health and Corporate Responsibility we have already been working with AMPATH (Academic Model Providing Access To Healthcare) to provide support for cancer care in Kenya, and with Access Accelerated, a consortium of biopharmaceutical companies and other partners working together to help address the access barriers to non-communicable diseases, specifically cancer, in low- and lower-middle income countries.”

“Cancer care is an area of expertise for Celgene, and we have an opportunity to make a difference here. So we are using our knowledge and funds and collaborating to improve cancer care for those in certain resource-constrained countries.”

To learn more about the new grant program or how to apply, visit the Celgene Cancer Care Links website.



[i] Torre Lindsey A., Bray Freddie, Siegel Rebecca L., Ferlay Jacques, Lortet-Tieulent Joannie, Jemal Ahmedin. Global cancer statistics, 2012. CA: a cancer journal for clinicians. 2015;65:87-108.http://onlinelibrary.wiley.com/doi/10.3322/caac.21262/full

[ii] Parkin D. Maxwell, Bray Freddie, Ferlay Jacques, Jemal Ahmedin. Cancer in Africa 2012 Cancer Epidemiology and Prevention Biomarkers. 2014;23:953-966. http://cebp.aacrjournals.org/content/23/6/953.long

[iii] Cancer Stat Facts: Female Breast Cancer. National Cancer Institute. https://seer.cancer.gov/statfacts/html/breast.html Accessed November 2017.

[iv] Gambia Cancer Institute. http://afcrn.org/membership/membership-list/104-gambia Accessed November 2017.

As trained pharmacists, Jann Skelton and her late husband, David, spent their lives helping patients and caregivers. But when David was diagnosed with pancreatic cancer in 2012, the tables turned. “For the first time, we were in the shoes of the patients and the caregivers,” Skelton said.

5 Tips for Caregivers to Avoid Feeling OverwhelmedWhile Skelton’s background helped her manage the medical aspects of her husband’s care, dealing with the stress and emotions were more difficult. Like most caregivers, Skelton had to figure out how to take care of her own needs so that she could effectively care for her husband while also caring for her young children.

While the average age at diagnosis for pancreatic cancer is 71, David was just 49. They were raising two children, who were 8 and 11 at the time. Jann had a health care consulting business, which required her to travel often, and an ambitious five-year plan for her family and career.

“Pancreatic cancer laughed mightily at that plan,” she said. “To focus on caring for my husband and our kids, I shut down my work and volunteering with the school and my church. I’ve never had a situation with so much stress.”

Skelton isn’t alone in facing this high burden. Cancer caregivers spend an average of 33 hours a week caring for their loved one with cancer. Half of cancer caregivers have high levels of emotional stress and 62 percent of them report being in a high burden situation.

WHEN JANN SKELTON’S HUSBAND WAS DIAGNOSED WITH PANCREATIC CANCER, SHE MADE SURE TO TAKE CARE OF HERSELF AND ACCEPT HELP FROM OTHERS WHILE CARING FOR HIM.

WHEN JANN SKELTON’S HUSBAND WAS DIAGNOSED WITH PANCREATIC CANCER, SHE MADE SURE TO TAKE CARE OF HERSELF AND ACCEPT HELP FROM OTHERS WHILE CARING FOR HIM.

Put on Your Mask First

50% of cancer caregivers experience high levels of emotional stress. Much like airplane passengers are instructed to put on their oxygen mask first before helping others, caregivers need to take care of themselves first. “If you’re taking even the most basic care of yourself, you will be a better caregiver,” she said.

Skelton’s friends and extended community stepped in. Sometimes another parent would bring her son home from soccer or stay at the house while she went grocery shopping. They provided her with breaks so she could go to yoga class. Doing yoga a few times a week gave her an hour to think about nothing.

It was difficult for Skelton to take a break sometimes because she felt she was the family lynchpin. She managed her husband’s feeding tubes and helped him with daily activities such as bathing and dressing.

“It was hard to go to a yoga class when I knew he might have felt better if I didn’t,” she said. “Sometimes I went anyway. It was something I just needed for myself.”

Sometimes you don’t realize the circle you have until something bad happens. I didn’t realize I had that circle.

Realize You Have a Circle

Signs of StressPeople came out of the woodwork to help Jann and her family during this difficult time, partly because the Skeltons were honest and open about David’s pancreatic cancer diagnosis and the family’s situation—a tactic she recommends. People want to help; if they know there’s a need, they’ll fill it.

“That was an amazing gift,” Skelton said. “I didn’t realize the circle I had until something bad happened.”

It took Skelton a while to know what she needed, and then to be comfortable telling people who asked. “If you don’t answer, they’re going to do what they think you need. It’s better to give some positive direction,” she said.

She tells caregivers to make a list of what would be helpful and what causes the most stress, no matter how small. Maybe you need your doorknob fixed or your laundry or yard work done. If someone asks, pull out the list and let them pick.

DAVID SKELTON WAS JUST 49 AND IN THE MIDST OF RAISING TWO CHILDREN WHEN HE WAS DIAGNOSED WITH PANCREATIC CANCER.

DAVID SKELTON WAS JUST 49 AND IN THE MIDST OF RAISING TWO CHILDREN WHEN HE WAS DIAGNOSED WITH PANCREATIC CANCER.

Make a Standing Appointment

The day her husband was diagnosed, Skelton called a counselor to talk. She knew caregiving could lead to depression or anxiety, which can be exacerbated by exhaustion. For two years, she kept a standing weekly appointment for herself and her kids, depending on who needed it most. Her husband also saw a counselor, sometimes with Skelton.

“Your friends want to help you, but they can’t understand, and you’d never want them to,” she said. “The counseling time helped me think through how to manage the situation and not to get lost in ‘what if’ thinking about the future.”

Skelton also found a group of young widows who were her support system after her husband passed. “To find people nearby with the same life experience is stabilizing. You feel like you’re not out there in the deep end,” she said.

It’s still difficult for Skelton to talk about her husband’s passing. But she believes that her experience of being a caregiver has set an example for her kids — as well as for other cancer caregivers — that no matter what they are going through, they never have to go it alone. Five years later, she and her kids still feel enveloped by their community.

To read more about working together to cope with a pancreatic cancer diagnosis, see “Facing Each Day with Pancreatic Cancer, Hand-in-Hand.”

Passion for the Patient, CR cover

2017 crr cover, Passion for the PatientAt Celgene, we have a deep and abiding passion for the patients we serve. This is our core attribute and a significant responsibility, which the people of Celgene take very seriously in their work each day. Celgene’s 2017 Corporate Responsibility Report, released this week, demonstrates how Celgene continually strives to realize our passion for the patient, as well as support our employees, communities and the well-being of the environment.

Celgene is a science-based company that creates value for all stakeholders when we fulfill our mission to develop medicines that improve and extend the lives of patients today, while investing in cures for the future. “Celgene’s innovative therapies offer hope to patients with significant medical needs,” said Mark J. Alles, CEO of Celgene. “We are therefore focused on how we can make these medicines accessible for the patients who need them.”

In 2016 alone, more than 500,000 patients were treated with Celgene therapies. In doing so, we are fulfilling our purpose — to change the course of human health through bold pursuits in science, and a promise to always put patients first.

As a founding member of Access Accelerated, a partnership of 23 biopharmaceutical companies, Celgene is working to create innovative and sustainable solutions to help improve access to treatment and care for non-communicable diseases, such as cancer, in low-and middle-income countries. Understanding that collaboration is key to making measurable progress, we’re working across health systems and sectors, and supporting the achievement of the UN Sustainable Development Goals.

Celgene, working together with our partners and collaborators, applies expertise and resources to help build health care capacity and access in under-resourced countries to help combat a growing incidence of cancer and other diseases. That’s why we actively support a consortium of academic health centers, called the Academic Model Providing Access to Healthcare (AMPATH), which focuses on improving the health of low-income populations in Kenya and achieving a replicable model for addressing the short and long-term challenges of global health.

To support local communities, Celgene and its employees lend time, care and expertise to numerous initiatives and organizations each year. Celgene supports roughly 50 organizations in the U.S., and through Community Health Charities, provides employees with the opportunity to donate to causes and charities via a payroll deduction. During the 2016 Light The Night® Walk, a fundraising campaign that benefits the Leukemia & Lymphoma Society (LLS) and their research, 1,028 people walked on 63 Celgene teams, making Celgene the number one Light the Night biopharmaceutical partner with contributions totaling over $627,000.

To help shape a sustainable environment for generations to come, Celgene is also committed to best practices in environmental stewardship, including working to achieve the quantifiable 2020 environmental goals we established in 2016 for greenhouse gas emissions, renewable electricity, water withdrawal and solid waste. Last year, we achieved more than 50 percent of electricity use through certified renewable sources and diverted more than 40 percent of waste to recycling and recovery efforts.  These efforts were recently recognized through Celgene’s ranking as number seven among all U.S. companies, and the top health care company, in the Newsweek Green Rankings for 2017.

At Celgene, we strive to put patients first in everything we do,” said Zeba Khan, Vice President of Corporate Responsibility. “We constantly look for new ways we can make a unique and tangible difference in people’s lives, both in terms of access to lifesaving treatments and by contributing to a sustainable future.”

To read the 2017 Celgene Corporate Responsibility Report, please click here.