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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.

Over the past decades we have developed an intuitive understanding that better patient involvement in clinical trials delivers better patient outcomes.

Patients' Partners logoFrom involving representative patient populations in trials through to empowering patients to manage their own care, the impact of not listening to patients’ lived experience has resulted in significant change.With the benefit of experience, historical shortcomings have been rectified and opportunities have been identified to involve patients across the entire patient pathway in a more collaborative, less transactional way.

Patient organisations and their representatives offer unique insights through their lived experiences, but are often under-represented in medicine discovery, development and discussion. Celgene, with its Patient Partners is now seeking to redress this balance with the ChangeMakers programme.

But what is a ChangeMaker? A ChangeMaker is an individual, organisation or movement that supports and advocates for improvements in the world around them, using their lived experiences and expertise as the basis for this change.

Putting patients at the heart of everything we do is not only one of our company values, it is in our very DNA as a business

The Celgene ChangeMakers mission is to recognise and amplify the voice of patient organisations. We believe that by working with patient organisations to qualify and articulate the key opportunities for patient involvement we can provide a catalyst for change.

To provide an evidence base for the need for change, a Steering Group comprised of Celgene and patient organisation representatives reviewed the evidence and identified the key areas where patient organisations demonstrate the most value in the delivery of good healthcare.

The ChangeMakers Goals reflect the key areas where increased patient engagement can lead to the most positive changes for healthcare delivery. Celgene and patient organisation representatives reviewed evidence from over 100 clinical studies and other existing programmes to better understand and demonstrate the value of the patient voice. This evidence formed the foundation for the Celgene ChangeMakers Goals.

The Goals provide an evidence-based framework for achieving the four principle ChangeMakers Visions:

  • All clinical trials conducted in Europe will incorporate the patient perspective as early as possible. They will be designed and developed in partnership with patients and patient representatives, ensuring the real-world concerns voiced by patients are at the centre of scientific research
  • More patients to be aware of and participating in biopharmaceutical clinical trials across Europe
  • Patients have access to the right treatment and care at the right time
  • Every patient is empowered to make decisions related to their own health and care through active participation and increased understanding

“Putting patients at the heart of everything we do is not only one of our company values, it is in our very DNA as a business,” said Mark Alles, Chief Executive of Celgene. “ChangeMakers is a programme that strives for constant improvement and change. A Celgene ChangeMaker is never satisfied with the status quo, or resigned to accepting things because effecting change may be too complicated or take too much time.

“A ChangeMaker is an individual, organisation or movement that supports and advocates for improvements in the world around them, using their lived experiences and expertise as the basis for this change. We wanted to recognise this behaviour and its impact with our patient representative attendees, providing a forum during this year’s Summit to celebrate achievements to date and a framework to increase the visibility and voice of patients in the future.”

The ChangeMakers Goals were launched to over one hundred patient organisations from across Europe for the inaugural ChangeMakers Summit, part of the Celgene Patient Advocacy Framework, Patients’ Partners. This year’s Summit then saw not only patient representative delegates, but all of Celgene’s Senior Management team, led by Mark Alles, sign up to the Goals.

Once the Goals were officially launched to the delegation, the focus of the Summit then considered what actions are needed to achieve the Goals. Commitments also came from Celgene Senior Management on the steps the company will take to ensure patients feel more empowered and engaged in our activities and in their own health. To support this change and progress, the Summit also included capability sessions delivered by Celgene to share knowledge and insights with delegates from topics ranging from effective communications to building high impact teams.

The Goals are just the first step on the journey – an evidence-based framework for change and progress. Areas of joint responsibility for working together to secure broader commitments by listening to and actively involving the patient voice will be identified. Celgene ChangeMakers has created a powerful community of patients and patient organisations who are dedicated to improving the patient voice across the patient pathway. We will continue to work with our Patient Partners and ChangeMakers to uphold the Goals and our commitment to achieving them.

“The Celgene ChangeMakers programme is just the beginning,” said Anita Atema, Executive Director for Patient Advocacy for Europe and International Markets. “We now have our vision for change and concrete steps to get there. Now we need to make a concerted effort, with our patient partners, to keep up the momentum and ensure patients’ voices are heard as they should be.”

On the wall next to her computer, Tracey Iraca, Executive Director of the Myelodysplastic Syndromes (MDS) Foundation, Inc., keeps a photo of former board member Bob Weinberg and his dog, Milkshake.

EARLIER THIS YEAR, TRACEY IRACA WAS NAMED THE NEW EXECUTIVE DIRECTOR OF THE MYELODYSPLASTIC SYNDROMES FOUNDATION.

EARLIER THIS YEAR, TRACEY IRACA WAS NAMED THE NEW EXECUTIVE DIRECTOR OF THE MYELODYSPLASTIC SYNDROMES FOUNDATION.

When Weinberg was diagnosed with MDS in 1998, doctors offered him a stem cell transplant, a risky procedure that could have ended or extended his life. Like many, he struggled with finding a suitable match.  Weinberg decided against the procedure because there was no guarantee he would be able to live his life “without limits” and he did not want to risk the opportunity to see his daughter grow up.

Fifteen years later, when Weinberg’s condition deteriorated, he tried to get a transplant but was too sick to qualify. He passed away shortly thereafter.

“Deciding whether to get a transplant is a difficult decision for MDS patients,” Iraca said. “I think of Bob every time I talk with someone who is struggling with that decision.”

With limited treatment options, many of the estimated 60,000 MDS patients in the United States today still face difficult choices. Iraca is hoping to raise greater awareness of this issue during this year’s MDS World Awareness Day and through her new role at the foundation.

Unaware and Underdiagnosed

Iraca was first hired by the foundation in 2004, as a patient coordinator to write thank you notes to donors and send requested information to patients. Like many of the patients she sent information, Iraca knew little about this rare disease in which the bone marrow does not make enough healthy blood cells. But as she took on more responsibilities, she began to understand the unique challenges that MDS patients face.

One of those challenges is that the disease is difficult to diagnose, often leading to treatment delays. Not all primary care physicians are aware of this rare disease, so they may not recognize low blood counts as a reason to send patients to a hematologist for a bone marrow biopsy, which is necessary to diagnose MDS.

“The biopsy needs to be examined by a pathologist who is a specialist,” she explained. “Patients need to understand how difficult the diagnosis is to make and that it’s ok to ask for a second opinion. It’s the patient’s right to get confirmation on a diagnosis of MDS.”

AS EXECUTIVE DIRECTOR OF THE MYELODYSPLASTIC SYNDROMES FOUNDATION, IRACA (FAR RIGHT) HAS BEEN MEETING PATIENTS AND LEARNING MORE ABOUT THEIR NEEDS FOR OVER 13 YEARS.

AS EXECUTIVE DIRECTOR OF THE MYELODYSPLASTIC SYNDROMES FOUNDATION, IRACA (FAR RIGHT) HAS BEEN MEETING PATIENTS AND LEARNING MORE ABOUT THEIR NEEDS FOR OVER 13 YEARS.

As the MDS Foundation grew from its humble roots in a carriage house in Crosswicks, NJ, it began referring patients to over 175 MDS Centers of Excellence around the world to get proper diagnosis and treatment from specialists. These centers all have appropriately trained medical staff and meet other quality measures.

A Matter of Time

Since joining the foundation, Iraca has seen considerable improvements in the medical understanding of MDS. The number of annual references to the disease in scientific publications has increased 33 percent over the past decade, from 739 in 2007 to 980 in 2016. That research has helped uncover the role that the immune system plays in the development of MDS.

Despite that progress, treatments advances for MDS have been few and far between over the past decade. Stem cell transplants remain the only potential cure. But, as Weinberg’s experience exemplified, that approach comes with risks that some patients don’t want to take, and many other patients are ineligible because of their health.

The field is changing, and so much research is happening. We have many reasons to be hopeful for the future of MDS.

Most patients rely on supportive therapy such a transfusions to raise their low blood counts and treatments for infections. As a result, the median survival for high-risk MDS is still just two years.

“The good news is we’ve raised awareness of the need for new treatments through MDS World Awareness Day and throughout the year,” Iraca said. “So now there are more than 1,700 MDS ongoing clinical trials today. We’re extremely hopeful that there will be new options in the not-so-distant future. It’s only a matter of time at this point.”

Standing Room Only

Given the rise in MDS research, the foundation realized the need to educate patients and professionals alike. So they began hosting patient forums, support groups and international conferences focused specifically on the disease.

It’s at these events that Iraca continues to find inspiration from patients and family members who gather to learn more about MDS. She sees their excitement when meeting researchers and asking them questions. They learn coping mechanisms and ways to manage treatment side effects from other patients.

IRACA (SECOND FROM LEFT) AND COLLEAGUES HAVE TRAVELED AROUND THE WORLD HIGHLIGHTING THE NEED FOR MORE MDS RESEARCH AT MEDICAL CONFERENCES, INCLUDING THE 21st CONGRESS OF THE EUROPEAN HEMATOLOGY ASSOCIATION IN COPENHAGEN.

IRACA (SECOND FROM LEFT) AND COLLEAGUES HAVE TRAVELED AROUND THE WORLD HIGHLIGHTING THE NEED FOR MORE MDS RESEARCH AT MEDICAL CONFERENCES, INCLUDING THE 21st CONGRESS OF THE EUROPEAN HEMATOLOGY ASSOCIATION IN COPENHAGEN.

“So many newly diagnosed patients and families are scared,” she said. “It’s hard to sit through a program without getting emotional sometimes. But finding someone who is going through the same thing you are is so helpful to patients. You can see them starting to feel better at these events as they learn more about the disease and build relationships with other patients and caregivers.”

As for working with professionals, the MDS Foundation is expanding its educational efforts. They sponsor an international conference every other year and are looking to adding more regionally based professional events in the off-years in countries such as Australia, Brazil and Israel.

They have also established MDS-specific sessions during general medical conferences, including the American Society of Hematology annual meeting. Iraca has been surprised by the interest in and attendance at these sessions, which are often standing room only.

“They’re being trained on the most up-to-date research, which will trickle down to the patients,” said Iraca. “The field is changing, and so much research is happening. We have many reasons to be hopeful for the future of MDS.”

To learn how research is leading to new, more personalized treatment options for MDS patients, read “Hope through New Research into Myelodysplastic Syndromes.”

Last year, over 1,000 Celgene employees, friends and families gathered together in cities across the country to honor people whose lives have been touched by blood cancer, by raising lanterns along with nearly $285,000 for the Leukemia & Lymphoma Society’s (LLS) annual Light The Night® campaign. With that total, Celgene was named the top fundraising biopharmaceutical company in the United States. This level of contribution to the fight against blood cancer could not have been achieved without selfless teamwork from across the company.

“One team or one location can only go so far,” said John Kimmet, head of Strategic Planning and Decision Analysis and chair from Celgene for this year’s campaign. “Instead, working together across divisions and across the country, we’re making as large an impact as possible.”

When the opportunity came earlier this year to lead those efforts, Kimmet jumped at it. The decision was personal to Kimmet, who lost a dear friend and colleague to leukemia last year.

Lighting the Night Across the Country

“The Light The Night campaign was an opportunity to help others in the same situation my friend faced,” Kimmet said. “Last year, the funds raised by walks like these allowed the LLS to support over 500 patients in their time of need and to invest millions in research. That is just remarkable.”

Kimmet joined Celgene in January, so this year’s walk in Summit, NJ will be his first. Already, he sees how the campaign is helping people with blood cancer and bringing together employees at Celgene.

“It’s amazing to see our colleagues from across the country come together and pitch in,” Kimmet said. “This initiative exemplifies our strong sense of teamwork and our shared purpose of putting patients first.”

IN 2016, CELGENE EMPLOYEES AND THEIR FAMILIES AND FRIENDS PARTICIPATED AT THE LIGHT THE NIGHT WALK IN SUMMIT, NJ.

IN 2016, CELGENE EMPLOYEES AND THEIR FAMILIES AND FRIENDS PARTICIPATED AT THE LIGHT THE NIGHT WALK IN SUMMIT, NJ.

One of Kimmet’s colleagues who has supported Celgene’s efforts for Light The Night across the country is Allison Handel. She lives in Arizona and manages Celgene’s corporate alliances in hematology and oncology. She has been driving campaign participation across the commercial sales team for the past six years, motivated by her experiences at her local Light The Night walks.

“You see 8,000 people who are there to honor loved ones who have passed and patients who are battling blood cancer,” Handel said. “It’s an amazing scene.”

She has become passionate about putting the “fun” back into fundraising for the LLS campaign, especially by organizing the sales team’s charity auction.

“Each of Celgene’s 30 sales teams puts a lot of pride and energy into donating something special to auction off, and that effort makes them feel connected to the mission in a personal way,” Handel said. “This year’s auction got really competitive, with people one-upping each other by a dollar and trying to get the last bid. Everyone was having fun, and all the proceeds went to the LLS.”

CELGENE EMPLOYEES PLACED THEIR BIDS FOR ITEMS DONATED BY THEIR COLLEAGUES TO SUPPORT THE LIGHT THE NIGHT CAMPAIGN DURING THIS YEAR’S SILENT AUCTION.

CELGENE EMPLOYEES PLACED THEIR BIDS FOR ITEMS DONATED BY THEIR COLLEAGUES TO SUPPORT THE LIGHT THE NIGHT CAMPAIGN DURING THIS YEAR’S SILENT AUCTION.

This year, 70 baskets were donated, and ten items were auctioned off live in front of over 500 attendees. Hot-ticket items included an espresso package from the Seattle team, a week-long stay at a luxury condo in Honduras from the Kansas City team, and a private batting practice experience with the New York Yankees from the Phoenix team.

Each year, the silent auction continues to grow; this year’s event brought in about $70,000.

ONE OF THE ITEMS THAT WAS AUCTIONED OFF DURING THIS YEAR’S CELGENE SILENT AUCTION FOR LIGHT THE NIGHT WAS A LAKE TAHOE EXPERIENCE PACKAGE.

ONE OF THE ITEMS THAT WAS AUCTIONED OFF DURING THIS YEAR’S CELGENE SILENT AUCTION FOR LIGHT THE NIGHT WAS A LAKE TAHOE EXPERIENCE PACKAGE.

Waymire grew her Celgene Light The Night team by making the campaign personal for her colleagues. Since the San Diego facility comprises mainly research scientists who spend their time at the bench, not the bedside, Patty brings her teammates together for “Lunch and Learns” with LLS advocates and patients. There, employees can meet the people who benefit from their research and hear their stories directly.

“It’s an incredibly impactful and moving experience,” Waymire said. “Those patient visits allow our scientists to make a personal connection and motivates them to join the Light The Night team to help us to raise even more funds for research.”

CELGENE TEAM MEMBERS FROM SAN DIEGO WALKED IN THE 2015 LIGHT THE NIGHT WALK TO RAISE FUNDS FOR BLOOD CANCER RESEARCH.

CELGENE TEAM MEMBERS FROM SAN DIEGO WALKED IN THE 2015 LIGHT THE NIGHT WALK TO RAISE FUNDS FOR BLOOD CANCER RESEARCH.

Waymire believes that all her colleagues, regardless of location, get back as much as they give to the Light The Night campaign. And she’s thankful for the opportunity to lead her team in San Diego.

“The atmosphere at the Light The Night events is inspiring,” Waymire said. “Being in the community, interacting with patients, and seeing how many people raise different colored lanterns are compelling moments for everyone at Celgene who come together for this great cause.”

To find a fundraising event near you or donate online today, visit the Light The Night® website.

Recently, several insurers updated their formularies to offer patients with plaque psoriasis and psoriatic arthritis access to more treatment options without requiring them to follow step therapy protocols. This protocol required prior authorization process makes patients go through a series of steps, trying other medications and failing on them before the insurance company will pay for another available medication that may have been originally prescribed by their doctor.

DR. JERRY BAGEL IS A CERTIFIED DERMATOLOGIST AT WINDSOR DERMATOLOGY AND AN EXPERT IN THE TREATMENT OF PSORIASIS.

DR. JERRY BAGEL IS A CERTIFIED DERMATOLOGIST AT WINDSOR DERMATOLOGY AND AN EXPERT IN THE TREATMENT OF PSORIASIS.

Dr. Jerry Bagel, a certified dermatologist at Windsor Dermatology and an expert in the treatment of psoriasis, explains the importance of patients obtaining access to their recommended medications immediately and why it’s critical that dermatologists continue to encourage insurers to cover prescribed treatments from the outset.

Why is it important that patients have access to psoriasis therapies?

“We know that not every psoriasis treatment is right for everyone. Doctors have recommendations for the most appropriate therapies, patient responses to treatments vary, and each patient has their own preferences as well.

“That’s why when a patient with psoriasis recently told me that she was worried about the increased risks that come with certain injectable drugs, we decided on a medication that could be taken orally and with an acceptable risk-benefit profile at that time in her treatment regimen. It was an appropriate option for her.

“But her insurer declined our reimbursement request because they required she first step through a preferred formulary agent. As a result, she is considering foregoing treatment altogether.”

How common are situations like this in the treatment of psoriasis?

“Unfortunately, this story is not unusual. Nontreatment and undertreatment of psoriasis remains a significant problem in the U.S., according to the National Psoriasis Foundation (NPF). The main reason isn’t surprising; patients can’t get their insurance to cover their medication.”

“For example, another patient of mine with moderate to severe psoriasis was so self-conscious about his appearance that he rarely left home. I prescribed a treatment to help manage his disease, and he was eager to try it. But his insurer said we first had to try a Tier 1 treatment.”

“When the Tier 1 treatment did not work, the insurer agreed to the treatment that I initially prescribed. Within months, his condition improved. Today, he is feeling sufficiently self-assured to go bowling with his friends and start dating again. However, he may have reached that point months earlier if there had been no treatment delay or mandated step.”

In a perfect world, every psoriasis patient would get access to the chosen therapy for his or her specific situation.

 

How has access to psoriasis treatments changed over the course of your career?

“When I started practicing dermatology 35 years ago, insurers showed little interest in psoriasis treatments. It was not until biologics were introduced in the first decade of the 21st century that they began to take notice.

“Biologics and other targeted therapies provide additional therapeutic options for psoriasis. However, drug utilization review of preferred therapies with high market demand and high volume often prevents the use of new treatment options. Pharmacy benefit managers (PBMs) and insurers implement step therapy policies that favor the current preferred brands until the demand for the newer treatment is impactful enough to add it to their formularies as an additional option.”

How do step therapies affect doctors?

“These policies mean we doctors and our office staff spend too much time on the phone and filling out paperwork — time that could be better spent caring for our patients. As a doctor who has dedicated his life to helping patients, this is downright frustrating.”

What needs to happen to improve treatment access for psoriasis patients?

“In a perfect world, every psoriasis patient would get access to the chosen therapy for his or her specific situation. We must keep patients and doctors at the center of medical decisions. I hope that the recent progress we’ve seen from certain insurers in offering additional options is a sign of what’s to come, and this type of advocacy for appropriate treatments continues. If we help patients and physicians immediately access the prescribed psoriasis therapies, we could potentially improve thousands of lives.”

Don Baylor passed away Monday at the age of 68 after a long battle with multiple myeloma.

Many will remember him for his nearly two-decades-long professional baseball career as a manager and player. But for the multiple myeloma community, he was an inspiration and a fierce advocate.

When he was diagnosed with the blood cancer in 2003, he brought this reputation for never backing away from the plate to his new fight. At that time median survival for patients was only five years. However, access to treatment advances in multiple myeloma have changed that survival outlook. Baylor lived for 14 years following his diagnosis and his disease didn’t restrict him from the game that he loved, serving as a hitting coach for various teams until 2015.

At Celgene, we are proud to have supported Don Baylor’s advocacy throughout his journey with multiple myeloma and send our condolences to his family and loved ones.


Grateful for the advances that allowed him to manage his disease, Baylor believed in giving back to the multiple myeloma community. He often spoke about his illness and raised money to support research towards a cure. Baylor was an honorary board member of the Multiple Myeloma Research Foundation and believed in the extraordinary progress that researchers are making against the blood cancer.

For Don Baylor, and for many other patients like him, Celgene remains committed to advancing medical innovation and finding a cure for multiple myeloma.

At Celgene, we are proud to have supported Don Baylor’s advocacy throughout his journey with multiple myeloma and send our condolences to his family and loved ones.