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Navigating Secondary Progressive MS

Real World Health Care


Kathy Costello, MS, ANP-BC, MSCN

Real World Health Care continues our observance of Multiple Sclerosis Awareness Month by shining a spotlight on the National Multiple Sclerosis Society. We spoke with Kathy Costello, MS, ANP-BC, MSCN, associate vice president of Healthcare Access for the National MS Society, about the Society’s MS Navigator program and strategies that patients with Secondary Progressive MS can adopt to help them manage their disease and its impact on their daily lives.

Diagnosing Secondary Progressive MS

Real World Health Care: Secondary Progressive MS (SPMS) can be difficult to diagnose. Why is that?

Kathy Costello: SPMS is an MS disease course that follows Relapsing Remitting MS (RRMS). Most people diagnosed with RRMS will eventually develop SPMS within about 15 years of their initial MS diagnosis. A patient needs to go through about six months of observed progression of neurologic symptoms, in the absence of a relapse, before SPMS is considered to be the disease course.

Because the transition from RRMS to progressive MS is gradual, physicians may not be able to tell exactly when it occurs. If the worsening symptoms are left over from the last relapse, with permanent but stable damage that remains after the inflammatory attack has ended, the patient is considered to be experiencing an RRMS disease course. However, if the disease continues to worsen even though the person is no longer experiencing inflammatory relapses, they have transitioned to SPMS. Diagnosis takes on further nuances when you consider that some patients with SPMS may still experience relapses from time to time and may demonstrate new inflammation in their brain and spinal cord, though this doesn’t occur as frequently as during RRMS

Impact of Progressive MS on Daily Life

RWHC: Is there a difference between SPMS and other stages of MS in terms of its impact on a patient’s daily life?

KC: No matter what type of MS someone has, impacts are the result of damage in the central nervous system. The central nervous system is our command center: the spinal cord governs our movement and other functions, while the brain manages higher level functions and interprets messages. MS interrupts those functions, which translate into symptoms such as generalized fatigue, slowed thinking, changes in vision, coordination problems, weakness, walking difficulties and even loss of bladder and bowel control.

With progressive forms of MS, including SPMS, those symptoms will worsen over time. Patients will experience more fatigue and more difficulty walking, for example. These worsening symptoms make it harder to participate in work, social life and activities of daily living at home. It’s important to note, however, that MS is heterogeneous. No two people with SPMS will be exactly the same. One person may have a tremendous amount of impairment while another may have far less, or may have a different type of impairment. When people hear the word “progression,” it can be frightening and can conjure images of wheelchairs, dependency and an inability to participate, but that’s not always the case.

RWHC: It sounds like the progression of MS affects not only the person with MS, but also the people around them as well.

KC: True, especially when it comes to the patient’s family. Most families and households have defined roles and responsibilities. When MS symptoms start to interfere with a patient’s activities, those roles may need to change. Frustration, anger and feelings of guilt can exist on both sides: from the patient who can no longer participate as she/he did before MS, and from the family members, who may need to assume more household or other roles over time.

The financial burden of MS can also put a strain on family dynamics, especially if the patient can no longer work or has a reduced earning potential because of MS symptoms. MS is remarkably expensive, even with insurance, which may not cover the entire cost of medications, rehabilitation or assistive devices like walkers and wheelchairs.

SPMS Treatments and Management

RWHC: Are there any treatments on the horizon for SPMS?

KC: There is an enormous amount of research going on in progressive forms of MS. One medication for SPMS, siponimod, has completed its clinical trials and is currently under review by the FDA. A decision on approval is expected very soon. Other treatments, including high-dose biotin, also are being studied.

With $32 million dedicated to research in 2019, the National MS Society is the largest private funder of MS research, and 94 percent of our research portfolio is relevant to progressive MS. In addition to treatment research, we are also funding research into better understanding the disease process, as well as lifestyle and rehabilitation-related management strategies.

We’re also a founding member of the International Progressive MS Alliance, which is accelerating research with an eye toward appropriate measurement metrics during clinical trials, how imaging or blood tests may be used to identify someone at risk for progression, and treatments that can slow or halt the process of progression.  Of course our ultimate goal is a cure.

Support for SPMS Patients

RWHC: How is the National Multiple Sclerosis Society helping to support patients with SPMS?

KC: Among the many services and programs we have nationwide, our flagship programs here at the National MS Society is our MS Navigator program. The program matches patients with highly skilled, compassionate professionals who can connect them to the information, resources and support they need to meet the many challenges imposed by MS. MS Navigator offers a live, online chat function as well as a toll-free phone number at 800-344-4867. Patients can also connect via email and through our community discussion board.

If our MS Navigators identify someone with highly complex needs, we refer them to our case management program, the Edward M. Dowd Personal Advocate Program. This program connects patients with case management organizations and individuals in the patient’s local community. We help to train those case managers so they are highly knowledgeable about MS, and we help them work toward solutions for patients.

I would also like to point out our Healthcare Access team, who work with healthcare professionals to ensure providers of all disciplines become more knowledgeable about MS and the services and expertise we offer The National MS Society funds a number of programs to ensure the workforce of the future including a medical student mentorship program to foster interest in a career in MS care, clinical fellowships for physicians who wish to specialize in MS care, and an MS track in 3 doctoral level physical therapy programs.

The National MS Society encourages SPMS patients to be as proactive as possible in mitigating the effects of MS. The disease gets worse when people develop co-morbid conditions such as cardio-vascular disease, so it’s important to follow a healthy eating plan, stay as active as possible, maintain a healthy weight and quit smoking. Depression is common in MS patients, and mood disorders can keep people from staying on their medications and participating in a healthy lifestyle. Above all, don’t suffer in silence. Speak up about any symptoms of stress or depression so that effective interventions can begin.

Read this article online at Real World Health Care.

Update Your Outlook on Progressive MS

Real World Health Care


Rosalind Kalb, PhD, Senior Programs Consultant and Patricia Kennedy, RN, CNP, MSCN

Editor’s Note: Friday, March 1, marks the start of MS Awareness Month, and Real World Health Care will be focusing on Secondary Progressive Multiple Sclerosis through the end of the month.

This article is reprinted, with permission, from Can Do MS. To read the original article and learn about additional resources for people with multiple sclerosis and their caregivers, click here.

The words “progressive MS” can set off alarm bells. No one wants to hear that his or her MS is, or has become, progressive. The term “progressive MS” applies to different aspects of the disease, and it helps to know how it is being used. Approximately 85% of people are initially diagnosed with relapsing-remitting MS (RRMS).

At some point in their disease course, typically after 10-15 years, relapses become less frequent or stop occurring completely, the disease progresses more consistently but not necessarily more rapidly, and changes in function become more pronounced. When that happens, the person is said to have transitioned to secondary progressive MS (SPMS). Approximately 15 percent of people are initially diagnosed with primary progressive MS (PPMS). This group tends to experience gradual changes in symptoms and function over time with very few or no defined relapses. It is important for people to have an understanding of what these terms mean so that if they receive the word that they have progressive MS, they can begin to think about how to plan for any changes that may occur.

When symptoms worsen and abilities are affected, it can feel frustrating and frightening, particularly when a person feels he or she has been doing everything possible to manage the disease. Just when one seems to have a handle on MS and its symptoms, changes can occur, making the playing field feel totally different. Some people express fear of the future, seeing only a downhill slope. Others are disheartened and lose the oomph they need to try new ways to solve problems. This is a time when anger, grief, and anxiety may feel more intense. We urge all of you – individuals with MS, support partners and other family members – to step back and rethink the future. There are exciting research developments in the area of progressive MS, and there are many things you CAN do to optimize your health and well-being with progressive disease.

Managing Your MS – Using a Team Approach

Disease-modifying therapies (DMTs) are an important component of care for people with progressive MS. Most of the available DMTs are approved for relapsing forms of MS, which included those individuals with SPMS who continue to have occasional relapses. In addition, mitoxantrone is approved for SPMS and ocrelizumab is approved for PPMS. If you have been diagnosed with a progressive form of MS, be sure to discuss these treatment options with your healthcare provider.

Comprehensive MS care for a person with progressive disease also involves ongoing symptom management; rehabilitation to enhance function, comfort and safety; adaptive equipment to optimize mobility, independence and participation; and careful attention to optimizing mood and cognition.

Your best strategy is to assemble a team of professionals you trust and with whom you can communicate comfortably whenever there are changes in function and/or new symptoms. Your neurologist, nurse, physical or occupational therapist, and mental health professional can help you evaluate those changes and identify treatments, tools and resources to improve the situation. MS is a journey you do not need to travel alone.

Enhancing Your Health and Wellness

You are more than your MS – and your health and wellbeing are about more than treating your MS.

A healthy diet, regular exercise geared to your abilities and limitations, effective coping and stress management strategies and care attention to your mood are all essential to your overall quality of life. If you smoke, you have one more reason to quit: the research clearly shows that people who smoke have an increased risk of disease activity and progression.

There is now ample evidence that people with MS are more likely than the general population to have additional (‘co-morbid’) health conditions that impact their overall health and their MS. In particular, vascular conditions – including high blood pressure, high cholesterol, heart disease, diabetes – can accelerate the progression of MS and shorten a person’s lifespan. Therefore, prompt diagnosis and treatment of these conditions is important to comprehensive MS management. Regular check-ups and preventive screening as recommended for your age group can help you stay healthy and well.

Maintaining a Balanced Relationship

Healthy relationships with care partners are built on open communication and mutual give and take. Each person in the relationship needs to feel like a valued contributor. If your partnership starts to feel out of whack – with one person taking on too much of the doing and giving and the other feeling increasingly like a non-contributor, it’s time to talk about a redistribution of responsibilities. If your MS symptoms are making it difficult for you to do the things you used to do for your relationship and your household, think about swapping some things around.

Building Your Support Network – family, friends, medical team, employer, colleagues

Family, friends, colleagues, as well as your healthcare care team, are all essential parts of your support network. Stay connected with others, even if it means finding new activities, interests and opportunities for engagement; isolation isn’t good for your emotional or physical health!

Research in Progressive MS

Major clinical trials are underway, testing novel approaches to treating all forms of MS, including progressive MS. Scientists are learning new information about how MS damages the nervous system and cells and factors involved in the body’s ability to recover from injury. Early human trials of new therapies to repair myelin are already under way.

The International Progressive MS Alliance is focusing new resources on finding the answers that will lead to new treatments and ultimately, end progressive MS.
Studies are providing new evidence that exercise and rehabilitation can improve many functions and even help rewire and possibly build areas of the brain, and researchers are pursuing these leads to find the best ways people can maximize quality of life.

The journey with progressive MS will be different for every individual and will need to be managed differently. Success lies in building a support network, using all of the tools and resources available to you, and being creative and flexible in your problem-solving. You may need to do things differently than you did them before, but there’s no reason to sit on the sidelines. Be your own cheerleader but invite others onto your squad. It may feel difficult to cheer if the game isn’t going well, but on a basketball court, the cheerleaders don’t sit down if the score is not favorable. They cheer louder and get the fans involved too.

About the Authors

Rosalind Kalb, PhD, is a clinical psychologist who has specialized in MS care, support and education for over 30 years. She began her career in MS providing individual, group, and family therapy at the Medical Rehabilitation Research and Training Center for MS at the Albert Einstein College of Medicine and then at the MS Comprehensive Care Center in White Plains, NY. Dr. Kalb joined the National MS Society in 2000, creating online resources and educational materials for individuals and families living with MS and healthcare professionals until 2017. She continues her resource development work for the Society as a consultant. Dr. Kalb has written or edited multiple books including Multiple Sclerosis for Dummies (2nd ed.), Multiple Sclerosis: Understanding the Cognitive Challenges, Multiple Sclerosis: The Questions You Have; The Answers You Need, now in its 5th edition, and Multiple Sclerosis: A Guide for Families, now in its 3rd edition. Dr. Kalb has served as a Can Do program consultant since 2001.

Patricia Kennedy, RN, CNP, MSCN, a former Nurse Educator for Can Do MS, worked in the field of MS since 1987. For most of her MS career, she provided patient care. She served on the Board and was president of the International Organization of MS Nurses, served as a clinical consultant for the National MS Society and was a member of the Client Education Committee. She also was active in the Consortium of MS Centers and was on the editorial board of the International Journal of MS Care. She is the author of The Can Do Multiple Sclerosis Guide to Lifestyle Empowerment and is now retired.

Read this article online at Real World Health Care.

NASH: Fighting a Silent Epidemic

Real World Health Care


Emily Burke

By Emily Burke, PhD, Director of Curriculum Development, Biotech Primer

Consider the liver. It’s just one of the jumble of stuff inside that makes us tick, right? What do you really know about it though—other than it’s “vital?” In fact, the liver is your largest internal organ, and plays vital roles in neutralizing toxins, fighting infections, manufacturing proteins and hormones, controlling blood sugar, and helping to clot the blood.

It may just be time to start giving our livers a little more thought. We don’t just mean by taking it easy on the cocktails either. Liver disease is a growing health concern worldwide. A big part of the problem is that that the most common liver disease in developed countries, non-alcoholic fatty liver disease (NAFLD), often has no symptoms. Its onset is associated with obesity and type 2 diabetes—two conditions that are also on the rise.

In 2017, NAFLD was estimated to affect nearly one quarter of people worldwide. About 30 to 40 percent of people in the United States are thought to be affected, and about 3 to 12 percent of American adults suffer from the advanced form of the condition, non-alcoholic steatohepatitis (NASH). Currently, its only treatment is liver transplantation. However, a number of biopharma companies are tackling this growing concern. Let’s take a closer look.


NAFLD occurs when excess fat accumulates in the liver of people who drink little to no alcohol. NASH, the more severe form of the disease, is characterized by liver inflammation and scarring. As scar tissue accumulates, it impairs liver function. It’s the number one cause of non-alcohol related cirrhosis (severe, late stage scarring) which in turn can lead to liver failure.

People with diabetes, obesity, or metabolic syndrome run the risk of developing NAFLD and eventually, NASH. Treatments in the works largely focus on reducing inflammation and improving how the liver metabolizes fats.


Livers can only handle so much fat. Too much, and liver cells release inflammation-inducing signaling molecules, known as cytokines. These proteins trigger a series of events, the end result of which is the “attack of the white blood cells.” We think of these hemocytes as “good,” but not so with NASH. White blood cells, such as macrophages, invade the liver, increasing the chances that liver cells will die and damaging scar tissue will form. Here are a few small molecule drugs in the pipeline being developed to control inflammation:

  • Now in Phase II clinical studies, an inhibitor of the vascular adhesion protein 1 (VAP1). VAP1 helps white blood cells to migrate into the liver. Inhibiting VAP1 reduces this migration. Ta-da—decreased inflammation!
  • Selonsertib, currently in Phase III trials, takes a slightly different approach to inflammation. It inhibits the activation of two enzymes involved in cellular pathways leading to inflammation, liver cell injury, and scarring.
  • Cenicriviroc takes aim at liver inflammation by inhibiting receptors on the surface of white blood cells called chemokine receptors. Chemokines are chemical messengers that stimulate movement of cells towards the source of their release—typically damaged or infected tissue. This chemokine APB often helps the body fight infection. However, with NASH, this just damages the already inflamed liver further. Cenicriviroc is in Phase III clinical studies.


An alternate approach to treating NASH works on improving a patient’s lipid metabolism. Control the fat that accumulates in the liver, control the disease. Here are two more small molecule drugs that work to control fat accumulation:

  • Obeticholic acid has begun Phase III clinical studies. This product works by binding the nuclear receptor FXR. This is a type of receptor protein that is present inside of cells, rather than on their surface, like most other receptor proteins. When activated by the appropriate signaling molecule, the nuclear receptor moves inside the cell’s nucleus, where it binds DNA at a specific location, turning on the expression of particular genes. Obeticholic acid specifically binds to and activates FXR, which modulates the expression of genes involved in lipid metabolism and glucose regulation. Researchers hope this change may disrupt the progression of NASH.
  • Yet another nuclear receptor activator is elafibranor. This drug works on the receptors PPAR α/σ. Activating these receptors switches on genes that increase the metabolism of fatty acids, decreasing liver fat and improving lipid profiles—as well as increasing insulin sensitivity and anti-inflammatory activities. The drug in now in Phase II clinical studies for advanced NASH patients.

Several other NASH drugs are coming down the pike, including a small molecule conjugate of cholic acid and arachidic acid (inhibits fatty acid synthesis; Phase II) and a small molecule drug that inhibits inflammation-promoting caspase enzymes (Phase II). Let’s hope that 2019 sees at least one FDA approval from the handful of Phase III candidates out there to step up the fight against this silent epidemic.

About the Author
Dr. Emily Burke is the Director of Curriculum for Biotech Primer and is responsible for customizing client training, delivering training sessions and writing the Biotech Primer WEEKLY, a free electronic newsletter that explains the science behind the headlines. She received her B.S. in biological sciences from Carnegie Mellon University and her Ph.D. in molecular biology from the University of Southern Alabama.

Readers are invited to subscribe to the free Biotech Primer WEEKLY.

Read this article online at Real World Health Care.

Along the Caregiving Journey

Real World Health Care


Susan Reinhard, RN, PhD, FAAN

In our first interview for our 2019 caregiving series, Real World Health Care spoke with Susan Reinhard, RN, PhD, FAAN, senior vice president and director of AARP’s Public Policy Institute and chief strategist, Center to Champion Nursing in America.

We talked with Dr. Reinhard about the many challenges facing people who are caring for loved ones with chronic illness and how AARP can help them along their journey as a caregiver.

Real World Health Care: AARP is well known as an organization that empowers people to choose how they live as they age. How does that mission extend to people caring for a loved one with a chronic illness such as multiple sclerosis, cancer or Parkinson’s disease?

Susan Reinhard: Our mission at AARP is to help family caregivers by giving them what they need, when they need it and where they need it. The journey is different for every individual caregiver and every individual loved one, and it can change over the trajectory of an illness.

Acting as a family caregiver for someone with a chronic, long-term condition may be a completely different experience than caring for a loved one with an acute condition like a heart attack, stroke, or even cancer – all of which are shocking but are treatable. On the more chronic end of the disease spectrum, consider Parkinson’s disease, a progressive disease that a person can live with for 20 or 30 years. Diseases like Parkinson’s, as well as MS, are typically difficult to diagnose and lead to many questions about how to treat the disease, how living with the disease will impact the person’s life and how to navigate the health care system.

Caregiving is not a one-fits-all-and-at-all-times role. AARP recognizes that and our caregiving resources reflect this vast range of experiences.

The Changing Face of the Family Caregiver

RWHC: Given the increase in professional services available to people with chronic diseases, why are more and more family members being called on to act as caregivers for a loved one?

SR: Advances in medicine have led to people living longer with chronic illness than in the past, and the trend from a health system perspective is for patients to move out of the acute-care hospital setting and into ambulatory, home-based care. While patients may prefer to be at home instead of the hospital or a long-term care facility, they often need help with both complex medical tasks like changing a wound dressing, as well as activities of daily living like bathing, shopping and cooking.

Tasks that used to fall to providers such as nurses, physical therapists or dieticians are now performed by family caregivers. For example, someone with motor skill issues due to multiple sclerosis may need a family member to administer medications or nutrition. Our research, which we plan to update in April, shows that a good percentage of caregivers who perform these complex medical tasks lack adequate training to do so, often learning by trial and error. As a result, they worry about making mistakes, and that anxiety can affect their emotional well-being.

Moreover, the proliferation of professional services often adds to the burden. There are more appointments to coordinate and travel to, more medications to administer, more provider and insurance systems to navigate, and more paperwork. Someone with a chronic illness can’t do these things all on their own.

RWHC: Is there a “typical” family caregiver who shoulders most of the responsibility?

SR: Most people are familiar with the concept of the “sandwich generation” – the middle-ager who is taking care of both dependent children and an aging parent. Indeed, the “average” family caregiver is a late 40s white woman caring for her elderly mother. However, family caregivers are of all genders, ages, ethnicities and cultures. You may be surprised to learn that one in four family caregivers today is a millennial. In order to care for a loved one with a chronic, long-term illness, these millennials are forced to put their own lives on hold, delaying decisions about their careers, relationships and even where they live. They often feel isolated because their peers can’t relate to the complex issues they face, like managing medication schedules, sorting through Medicare coverage or changing a feeding tube. They are thrust into a confusing world that most people are unprepared for, let alone someone in their 20s or 30s.

Advocating for Caregivers

RWHC: How is AARP advocating for family caregivers?

SR: AARP is working closely with caregivers and patient support organizations nationwide to push for laws that support caregivers. We are proud to note that since 2014, about 300 state laws have been enacted to help family caregivers. As an example, the CARE Act is now in place in 40 states and territories. Under this law, every time a person is admitted to the hospital – regardless of their age or condition – they must be asked if they have a family member who will be helping them. If yes, the patient is asked whether the family member should be added to their electronic health record as part of their care team. If the caregiver will be providing medical care, they must receive proper instruction. Moreover, the caregiver must be informed of when the patient will be discharged in a timely manner.

We’re now in the process of studying how the CARE Act is being enacted at health systems across the country. How do hospitals identify caregivers? It’s not always a spouse or next of kin. How are they training staff to make sure caregivers are connected to the care team? How do they anticipate what a caregiver might need? In the fast-paced hospital environment with an overload of forms and charting to manage, it’s easy to lose sight of the family caregiver.

We’re promoting best practices when we find them. For example, one hospital gives family caregivers a badge like their staff wears, with the caregiver’s name and the title of Caregiver. With that badge, the caregiver is eligible for discounts in the hospital gift shop and cafeteria. It seems like a small gesture, but it really means a lot for caregivers to be acknowledged as an integral part of the care team.

RWHC: Are there other ways in which AARP supports caregivers?

SR: We have a wealth of information on our web site, including a series of Prepare to Care guides, which help to make the job more manageable.

We are in the process of working with a few other organizations and the UC Davis College of Nursing as part of The Home Alone Alliance to develop a series of evidence-based instructional videos and tips sheets to help family caregivers learn how to do complex medical tasks such as administer an injection, change a wound dressing and do a tube feeding.

AARP also is acutely aware of the financial stresses related to being a caregiver. Our research shows that about 80 percent of family caregivers spend money out-of-pocket to help defray their loved one’s medical costs. Those out-of-pocket costs range on average from $7,000 a year to $12,000 a year for long-distance caregivers who must travel to be with their loved one. Often, caregivers are forced to leave their job or cut down on hours, which has a long-term effect on their whole family in terms of the impact on social security earnings and pensions. To help, AARP offers a range of financial tools and information.

We are also encouraging employers to step up and help employees who are caregivers. We partnered with the Northeast Business Group on Health to create a guide to help HR and benefits leaders support employees, and we teamed up with the United Way to launch a Do You Care Challenge to help raise awareness about millennial caregivers and their need for more caregiving-friendly workplaces.

Through the vast array of caregiving-related advocacy efforts, education, partnerships, and resources AARP offers, we want family caregivers to know that they are valued as an essential part of their loved one’s care team. At the same time, they need to take care of themselves as well. I often liken my message to the crew member instructions when flying: “Be sure to put your own oxygen mask on first before assisting others.”

Read this article online at Real World Health Care.

2019 In Focus: Insights and Services for Patients and Their Caregivers

Real World Health Care


Krista Zodet, President

By Krista Zodet, President, The HealthWell Foundation

As the founding sponsor of Real World Health Care, The HealthWell Foundation is honored to have a forum in which to shine a spotlight on the organizations making a positive impact on patient communities. We understand the physical, emotional and financial devastation involved in having a chronic or life-altering illness. We also understand how such illnesses can impact a patient’s loved ones, some of whom shoulder significant responsibilities and face daunting challenges in their roles as caretakers.

Throughout 2019, Real World Health Care will explore the special needs of friend-and-family caregivers, particularly those caring for patients with heart failure, cancer, secondary progressive multiple sclerosis, and migraines. We’ll highlight caregiver services from leading patient advocacy organizations and will seek to share advice with those who may be struggling with the many issues that can arise when one is a caregiver.

According to the Caregiver Action Network, more than 90 million Americans care for loved ones with chronic conditions, disabilities, disease or the frailties of old age. A 2015 study from the National Alliance for Caregiving and AARP paints a picture of the family caregiver in America:

  • The “typical” family caregiver is a 49-year-old woman who takes care of her 69-year-old relative.
  • Sixty percent of caregivers are female.
  • Caregivers who provide unpaid care for at least 21 hours a week have been doing so for an average of five and a half years and expect to continue caregiving for another five years. Nearly half of these caregivers report high emotional stress.
  • A third of caregivers have a full-time job, while a quarter work part time.

When announcing the study results, an AARP spokesperson noted, “We’re facing a caregiving cliff. By mid-century there will be only three family caregivers available for each person requiring care. That means, to avoid putting them at higher risk as they age, we need to provide support for existing caregivers who are underserved by the current long-term services and support system.”

NASH: A Growing Public Health Burden

During 2019, Real World Health Care also will focus on another underserved group: patients with Non-Alcoholic SteatoHepatitis (NASH). The most severe form of non-alcoholic fatty liver disease, NASH is a growing concern in the medical community because of its potential consequences for patients and its high prevalence in the population.

According to the NASH Education Program, NASH is a chronic, yet silent disease, which means that most patients live with it for several years without experiencing any symptoms. It can progress to more serious disease stages, such as advanced fibrosis, cirrhosis, liver failure or liver cancer.

While there currently is no approved therapy for patients, the scientific community is working diligently to find safe, effective treatments for the disease. We’ll be profiling NASH research priorities throughout the year, along with support services available to patients.

I invite you to follow Real World Health Care as we cover these topics in 2019. Click the Subscribe button on the right side of this page to be notified when new posts publish. You can also follow us on Twitter @RWHCblog.

If you are working with an organization that supports either NASH patients, or caregivers of patients with heart failure, cancer, secondary progressive multiple sclerosis, or migraines, let us know. We would be delighted to share your story with our subscribers. Contact us today.

Read this article online at Real World Health Care.

Cancer: Taking Care of the Mind and the Body

Real World Health Care


Krista Zodet, President

By Krista Zodet, President, HealthWell Foundation

This post marks the final article in our series on cancer-related behavioral health. As the founding sponsor of Real World Health Care, the HealthWell Foundation has been honored to raise awareness of the behavioral health needs of cancer patients and to shine a spotlight on the organizations that participated in this important series:

The HealthWell team would like to recognize these amazing organizations for sharing their guidance and for the support we received in helping us promote our Cancer-Related Behavioral Health Fund to assist more patients in need.

Helping Cancer Patients Afford Concurrent Behavioral Health Treatments and Therapies

Providing financial assistance to people living with cancer has always been a priority at HealthWell. Through our 20+ oncology funds, we’ve assisted more than 120,000 individuals living with cancer with more than $380 million in assistance.

We recognize the unmet needs of oncology patients and the importance mental health has on treatment, recovery and overall well-being. We’ve seen first-hand how financial distress can impact the health and lives of individuals and families. Cancer patients with behavioral health conditions are particularly hard hit; according to the American Society of Clinical Oncology (ASCO), patients with some forms of cancer incur $8,000 more per year in health care costs than cancer patients without behavioral health conditions.

Because HealthWell believes in operating programs that focus not just on the patient’s disease or condition, but on addressing the total needs of the patient, we are pleased to offer a Cancer-Related Behavioral Health (CRBH) Fund to assist individuals in need of cancer-related behavioral health treatments.  The Fund provides financial assistance to individuals with a diagnosis of cancer in covering their out-of-pocket treatment-related costs for prescription drugs, counseling services, psychotherapy, and transportation.  HealthWell provides up to $2,000 in financial assistance for a 12-month grant to eligible patients who have annual household incomes up to 500 percent of the federal poverty level.

Since launching the Fund in May, our grants have started to make a positive impact on people in need, including Robyn who is living with breast cancer:

“HealthWell has been a major help to me for a long time. I consider myself lucky to have benefited from a number of grants. I’d probably be dead without HealthWell.  HealthWell came to my aid with grants for my cancer treatments and now they are assisting me through the Cancer-Related Behavioral Health Fund so I can receive necessary medications and counseling to manage my condition.  The Foundation continues to come through where others have not.  It’s been a rough road and HealthWell’s assistance means a great deal to me.  Someday, I hope I can be on the other side and pay it back.” Robyn – CRBH grant recipient

Robyn is just one of countless Americans who struggle with cancer-related behavioral health problems. Unfortunately, the risk of psychological disability is six times higher for adults living with cancer than those not living with cancer. And more than half of cancer patients do not receive social or emotional support as part of their care. With so many barriers and unnecessary stigmas associated with behavioral health treatments, we believe that the cost of treatment should not be one of them.

To learn more about the fund and how you can support it or apply for financial assistance through the fund, visit HealthWell’s Cancer-Related Behavioral Health Fund page. We also invite you to join the ongoing conversation on Twitter @RWHCblog.

Read this article online at Real World Health Care.

Young Adult Cancer Survivors Need Special Support

Real World Health Care


Jean Rowe, LCSW, OSW-C, CJT

By Jean Rowe, LCSW, OSW-C, CJT, Associate Director of Support Services, Young Survival Coalition

Young adults are at a certain stage of life development when diagnosed with cancer. They may be thinking about career decisions (i.e. do I stay in this job, go back to school or seek something new), where they want to live (e.g. hometown or move to another city), independently living on their own, and deciding what kind of mate they desire. They are not thinking about their lives being turned upside down by a cancer diagnosis.

All too often young adults are told “you’re too young” to have cancer when a concern is raised. This can result in late diagnoses and more advanced disease stage.

Young adults diagnosed with cancer experience interrupted lives. Their careers may be put on hold. They may have to take significant time away from work, which may or may not place their positions in jeopardy. They may have to move back home with their parents, which may involve having to move across the country. They often do not have financial resources (e.g. savings, 401(k)) to address the magnitude of cancer costs. While their peers are going through normal life steps (i.e. going to college, dating, or getting married and having children), young adults with cancer often isolate themselves and feel alone, thinking that their friends and family cannot understand what they are going through.

Anxiety and depression are not uncommon side effects of a cancer diagnosis. Chemotherapy can induce early menopause, a life and health change young women are not meant to experience for another 20 to 30 years. Early menopause impacts sexual libido and causes vaginal dryness. While in treatment and, potentially, for years to come, physical concerns like bone density and cardiac toxicity must be monitored. This could include taking preventative medication post-treatment (e.g. for osteoarthritis).

All of this impacts the young adult’s identity and life as he or she knew it. These side effects can last well past treatment when a young adult “looks fine” to the outside world while, “inside,” he or she is struggling emotionally, physically and existentially. They need and deserve support.

Celebrating its 20th year, the Young Survival Coalition (YSC) is the premier organization dedicated to the critical issues unique to young women diagnosed with breast cancer. YSC offers resources, connections and outreach so women feel supported, empowered and hopeful.

We offer a multitude of wonderful ways to connect and a wealth of resources. A young survivor can connect 1:1, in person and online (both in support group format and through social media). Our national Summit typically hosts 600 young survivors and their loved ones each year. Our educational materials are available for free to download or order in hard copy through our website. Our support and resources are there so that every young woman diagnosed with breast cancer knows that she is not alone at any stage and at any point in her journey. This includes resources for metastatic young survivors whose concerns and needs deserve attention and support.

YSC also supports Co-Survivors (e.g. spouse/partner, family member and friend). Co-Survivors may instinctively place their survivor’s needs before their own. That can come at a cost; their health could be impacted as well. YSC offers support and resources to our Co-Survivor population.

We want to make sure no young adult and their co-survivors face breast cancer alone. YSC is here to help. Please reach out!

About the Author

Jean Rowe is Associate Director of Support Services, Young Survival Coalition (YSC). She joined YSC in 2011 with a background in clinical oncology social work. She is a licensed clinical social worker, a certified oncology social worker and a certified journal therapist. Her focus includes the crafting, piloting and implementing of supportive and educational programming for young breast cancer survivors, co-survivors and health care providers. As a certified journal therapist, Jean crafted an original program addressing re-establishing intimacy after breast cancer as well as continuing education journal writing programs for mental health and nursing professionals regarding compassion, fatigue, and self-care. She holds a master of social work from the University of Georgia and a bachelor of arts from the University of South Carolina.

Suggested Reading:

Acquati C., Zebrack B.J., Faul A.C., Embry, L, Aguilar, C., Block, R.,…Cole, S. (2017). Sexual functioning among young adult cancer patients: A 2-year longitudinal study. Cancer, 124(2), 398-405.

Adams, E., McCann, L., Armes, J., Richardson, A., Starck, D., Watson, E., & Hubbard, G., (2010). The experiences, needs and concerns of younger women with breast cancer: A meta-ethnography. Psycho-Oncology, 20, 851-861.

Cheung, C.K. & Zebrack, B. (2017). What do adolescents and young adults want from cancer resources? Insights from a Delphi panel of AYA patients. Support Care Cancer, 25(1), 119-126.

D’Agostino, N.M., & Edelstein, K. (2013). Psychosocial challenges and resource needs of young adult cancer survivors: Implications for program development. J Psychosoc Oncol, 31, 585-600.

Zebrack, B.J., Kent, E.E., Keegan, T.H., Kato, I., & Smith, A.W. (2014). Cancer sucks and other ponderings by adolescent and young adult cancer survivors. J Psychosoc Oncol, 32, 1-15.

A Message from Our Sponsor

As the founding sponsor of Real World Health Care, the HealthWell Foundation is committed to helping patients get the medical treatments they need, regardless of their ability to pay. We’ve seen first-hand how financial distress can impact the health and lives of individuals and families. Cancer patients with behavioral health conditions are particularly hard hit; according to the American Society of Clinical Oncology (ASCO), patients with some forms of cancer incur $8,000 more per year in health care costs than cancer patients without behavioral health conditions.

In keeping with our mission, we are now accepting applications for our Cancer-Related Behavioral Health (CRBH) Fund, specifically for treatment-related behavioral health issues in cancer. The Fund provides financial assistance to individuals with a diagnosis of cancer to help with cost-shares (deductibles, coinsurances and copayments) for covered services rendered by behavioral health providers (psychiatrists, psychologists, clinical counselors, and licensed social workers).

We invite readers of Real World Health Care to learn more about our CBRH Fund and how you can support it by visiting

Read this article online at Real World Health Care.

Effects of Parental Cancer on Children and Adolescents

Real World Health Care


Maryrose Mongelli, MSW, LMSW

By Maryrose Mongelli, MSW, LMSW, Women’s Cancers Program Coordinator, CancerCare

Cancer is a chronic and sometimes terminal illness that impacts the person physically, emotionally and often financially. Time becomes a commodity, and the fragility of life becomes salient, often accompanied by an increase in humility and gratitude. Life often gets turned upside down; familial roles might change and a family may lose financial security. All family members may be affected by a loved one’s cancer, and children are among the most vulnerable and susceptible to familial impacts.  This article will briefly explore some of the psychosocial issues that children may experience when a parent or guardian is diagnosed with cancer.

Difficult Emotions

Receiving a cancer diagnosis may elicit difficult emotions such as denial, anger, anxiety and/or depression, and these emotions may manifest in ways that psychologically affect children.  Family members experience turmoil when a parent is diagnosed with cancer. A newly diagnosed individual will begin to contemplate how they will tell their family, and if the individual is a parent with dependent children, they sometimes struggle with how to explain cancer to their children. Some may not tell children that they have cancer. In fact, parents may avoid using terms associated with cancer, such as chemotherapy, radiation, surgery and even the word cancer itself around their children as a means to protect their child(ren) from distress, disruption in their life, as well as avoiding questions about cancer and death. Avoidance is a coping mechanism that people use to protect themselves from experiencing difficult emotions when they are not ready to confront and accept the reality of why they are having these emotions.

Be Open and Honest

For a parent/caregiver with cancer, talking with their dependent children is one of the most difficult conversations a parent can have, but being open and honest with their child(ren) will help the child feel secure. Allowing the child(ren) to express their emotions and ask questions allows them to feel secure and grounded during an uncertain time. When a parent chooses not to disclose their cancer diagnosis to their child(ren), it is likely that their child will become confused and feel less secure when there are significant disruptions in their routine. Therefore, one can infer that parents often underestimate the level of their children’s intuition.

Children are Perceptive

Children are perceptive about the changes around them and will begin to question—whether internally or externally—any changes that occur, such as a significant change in the home environment, their own routine or their parent’s emotional and behavioral state. Like any partnership, rapport and trust need to develop. A child-parent bond does not automatically happen. A parent must earn their child’s trust even from birth. Children, especially young children, need to feel secure in their attachment to their parent/caregiver. When a parent is emotionally absent, insecure attachment occurs, e.g. a mother’s rejection of her child at birth. Moreover, when appropriate information is withheld from a child or adolescent their fundamental view of their parent becomes skewed. Young children may make assumptions that the cause of the changes/disruptions occurring is their fault, and this may result in the child becoming anxious or depressed.

Structure and Routine are Key for Children

A child thrives when their parents (guardians) provide structure and routine, and a cancer diagnosis can cause disruption to a child’s routine.  When first diagnosed, parents of dependent children are generally physically present, but psychologically less available to their children and their partners, due to their inability to be responsive to the child’s/adolescents needs (Earley & Cushman, 2002), resulting from a cancer diagnosis. This may result in a change in family dynamics, e.g. children might become parentified. Parentification is the role reversal between the child and the parent/caregiver, whereby the child becomes obligated to become the caregiver for their parent/caregiver, e.g. caring for younger siblings. If the child is an adolescent he/she may find employment to supplement the financial impact cancer has on the family.

As a result of parentification, adolescent truancy rates may increase and school attendance rates may decrease (Shah, Armaly, & Swieter, 2017). The parentification of children/adolescents prevents their personality, social, and emotional development. Poor social and emotional development may have significant impact on their future relationships. As a result, psychological issues that can occur in children when a parent is diagnosed with cancer or chronic illness are predominately adjustment disorders, anxiety, and depression. Based on a cohort study conducted by Wallin, (2018), adjustment disorders were more common among children/adolescents aged 13 and older, keeping in mind that the psychiatric history of the parent with cancer did not modify the results.

Changes in Behavior

As parents are mentally and physically distressed, they may not have the ability to identify that their children’s behavior has changed. Changes in behavior in the home can often carry over into school or social environments. Children with a depressed or anxious mood may withdraw from activities, act out, and have diminished academic performance. Research shows that adolescents, especially adolescent girls, exhibit more psychosocial distress than pre-adolescent children. According to Welch, Wasdworth & Compas (1996), parents may be unaware of their child(ren)’s emotional distress, or have difficulty acknowledging it.

Children, not wishing to further burden their parents, may not express their emotions.  The internalization of emotions among family members, such as parents not discussing cancer to spare their child or children internalizing their feelings to avoid burdening their parents, leads to a lack of communication.

Communication is Key

In order to avoid misinterpretations or additional stress and anxiety within in the family when there is a cancer diagnosis, communication is key. Talking with children about their cancer diagnosis can be very distressing and is one of the most difficult conversations to have, and the first step is by using the word CANCER. As with any situation when talking with children it is best to talk in terms that their child(ren)/adolescents can understand e.g., “special medicine.” Parents can reassure their children that the cancer is not their fault, as well, giving them an opportunity to ask questions. Involving children in ways they can contribute to the parent’s treatment can be accomplished by assigning age appropriate tasks. Also, it is important to discuss the changes that may occur during treatment. Finally, reassure the child(ren) that they will always be cared for.

Although difficult during a time of great distress, communication allows the family to maintain stability within the unit by reducing misunderstandings, arguments, and fear. Within a family unit, stability or family homeostasis, is considered the family “NORM.” Considering that all families are different, ideally stability would be when all family members feel supported and nurtured. Stability within the home may combat a sense of insecurity. Insecurity may increase anxiety and depression among the family members and negatively impact the psychosocial functioning of children and adolescents. In order to mitigate feelings of insecurity and instability stemming from a cancer diagnosis, ideally a patient’s treatment plan would include psychoeducation about how cancer affects the family. In addition, the patient’s treatment plan could include family counseling and psychological intervention if necessary. Children and parents are equally affected by cancer, and employing all resources available can achieve stability in a potentially unstable situation.

About the Author

Maryrose Mongelli, MSW, LMSW, is Women’s Cancer Program Coordinator with CancerCare. She provides supportive counseling and resources to patients, caregivers, loved ones, and to those who have experienced the loss of a loved one. She is a part of the CancerCare for Kids program and is also is affiliated with the National Association of Social Workers (NASW).

About CancerCare

Founded in 1944, CancerCare is the leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer. Its comprehensive services include counseling and support groups over the phone, online and in-person; educational workshops; publications; and financial and co-payment assistance. All CancerCare services are provided by oncology social workers and world-leading cancer experts. To learn more, visit or call 800-813-HOPE (4673).


Earley, L., & Cushman, D. (2002). The Parentified Child. Clinical child psychology and psychiatry, 7(2), 163-178.

Ruoqing, C., Regodón Wallin, A., Norén Selinus, E., Sjölander, A., Fall, K., Valdimarsdóttir, U., Fang, F. (n.d.). Psychiatric disorders among children of parents with cancer : A Swedish register-based matched cohort study. Retrieved from

Shah, B. K., Armaly, J., & Swieter, E. (2017). Impact of parental cancer on children. AntiCancer Research, 37(8), 4025-4028.

Welch, S. A., Wadsworth, E. M., & Compas, E. B. (1996, April 1). Adjustment of children and adolescents to parents cancer: Parents’ and children’s perspective. Cancer, 77(7), 1409-1418.

A Message from Our Sponsor

As the founding sponsor of Real World Health Care, the HealthWell Foundation is committed to helping patients get the medical treatments they need, regardless of their ability to pay. We’ve seen first-hand how financial distress can impact the health and lives of individuals and families. Cancer patients with behavioral health conditions are particularly hard hit; according to the American Society of Clinical Oncology (ASCO), patients with some forms of cancer incur $8,000 more per year in health care costs than cancer patients without behavioral health conditions.

In keeping with our mission, we are now accepting applications for our recently launched Cancer-Related Behavioral Health (CRBH) Fund, specifically for treatment-related behavioral health issues in cancer. The Fund provides financial assistance to individuals with a diagnosis of cancer to help with cost-shares (deductibles, coinsurances and copayments) for covered services rendered by behavioral health providers (psychiatrists, psychologists, clinical counselors, and licensed social workers).

We invite readers of Real World Health Care to learn more about our CBRH Fund and how you can support it by visiting

Read this article online at Real World Health Care.

“Triaging” Cancer and Behavioral Health Concerns

Real World Health Care


Joanna Morales, Esq.

This week, Real World Health Care shines a spotlight on Triage Cancer, a national, non-profit organization that provides education on the practical and legal issues that may impact individuals diagnosed with cancer and their caregivers, through events, materials and resources.  We spoke with Joanna L. Morales, Esq., CEO of Triage Cancer, who offered insights on how the concept of “triaging” can be applied to behavioral health issues associated with cancer.

Collaborating to Help Cancer Patients

Real World Health Care: Can you tell us about the mission of Triage Cancer?

Joanna Morales: Triage Cancer believes that collaboration is the key to providing valuable information and practical tools on survivorship to the cancer community, particularly to its underserved members. To that end, Triage Cancer works with cancer community partners, healthcare professionals and other experts to connect people to relevant, practical and personal information on cancer survivorship issues, such as access to healthcare, treatment options, psychosocial care, survivorship planning, and the practical, legal and financial issues that arise as a result of a cancer diagnosis.

Navigating a Cancer Diagnosis

RWHC: How does the concept of triaging relate to being diagnosed, living with and surviving cancer, including related behavioral or mental health issues?

JM: Triaging is the process of determining the priority of patients’ treatment based on the severity of their condition. When someone is dealing with a cancer diagnosis, there is information to learn, things that need to be dealt with, and decisions to make. Trying to juggle it all can be incredibly overwhelming. Our goal is to provide access to quality information about all types of cancer survivorship issues that may arise after a diagnosis. Armed with that information, individuals not only get the big picture of how to reach their end goals, but they can better decide what needs to be handled first and what can wait until later – the very definition of triaging.

With behavioral health issues associated with cancer, it’s about deciding what you can do for yourself and in which order those actions will best serve you. With a cancer diagnosis comes side effects and difficult decisions regarding treatment, health insurance, financial issues and more. Dealing with these legal and practical issues can create stress and anxiety. There is also data that shows that individuals with a higher financial burden are more likely to experience depression. We offer education on how to effectively navigate these issues, to thereby decrease stress, anxiety and depression. We also provide tools on stress management and other psychosocial topics that impact mental health.

For example, we offer a Don’t Stress the Stress webinar as well as a webinar on Staying Healthy After Cancer: Behaviors You Can Adopt to Improve Your Health. We also offer Quick Guides and an educational blog on our Resources page.

We have a new webinar coming up on November 15 that does a great job explaining what stress is and how it affects everyone differently. It will also provide simple, common sense and practical techniques to get stress under control. I encourage your readers to register for the webinar.

Recognizing a Problem is Just the First Step

RWHC: What do you think are some of the biggest challenges facing the cancer patient community when it comes to behavioral health problems?

JM: At Triage Cancer, we believe one of the biggest challenges regarding behavioral health is not being sure where to start looking for help. Recognizing a problem is just the first step. Finding answers can be hard, and taking action toward a healthier you can be even harder.

While health insurance coverage includes coverage for behavioral and mental health care, there are still likely to be out of pocket costs that you may be responsible for. If your budget is tight, consider financial assistance programs that may be available to you, rather than just skipping getting the help you need. Triage Cancer offers a separate website at, which provides information on how to navigate finances after a cancer diagnosis and connects you to financial assistance resources.

A Message from Our Sponsor

As the founding sponsor of Real World Health Care, the HealthWell Foundation is committed to helping patients get the medical treatments they need, regardless of their ability to pay. We’ve seen first-hand how financial distress can impact the health and lives of individuals and families. Cancer patients with behavioral health conditions are particularly hard hit; according to the American Society of Clinical Oncology (ASCO), patients with some forms of cancer incur $8,000 more per year in health care costs than cancer patients without behavioral health conditions.

In keeping with our mission, we are now accepting applications for our recently launched Cancer-Related Behavioral Health (CRBH) Fund, specifically for treatment-related behavioral health issues in cancer. The Fund provides financial assistance to individuals with a diagnosis of cancer to help with cost-shares (deductibles, coinsurances and copayments) for covered services rendered by behavioral health providers (psychiatrists, psychologists, clinical counselors, and licensed social workers).

We invite readers of Real World Health Care to learn more about our CBRH Fund and how you can support it by visiting

Read this article online at Real World Health Care.

Cognitive Behavior Therapy for Teens and Young Adults with Cancer

Real World Health Care


Tammy Schuler, PhD

This week, Real World Health Care focuses on the special behavioral health issues that can impact teens and young adults with cancer. We are delighted to share information on this topic from the Association for Behavioral and Cognitive Therapies, and to feature insights from Tammy A. Schuler, PhD, a Licensed Clinical Psychologist and Director of Outreach and Partnerships for ABCT.

ABCT is a multidisciplinary organization committed to the enhancement of health and well-being by advancing the scientific understanding, assessment, prevention, and treatment of human problems through the global application of behavioral, cognitive and biological evidence-based principles. It seeks to decrease human suffering using science.

Supporting the Cancer Community

Real World Health Care: How does ABCT address the special needs of adolescents and young adults with cancer?

Tammy Schuler: Adolescents and young adults (AYAs) and their families coping with cancer have a lot to deal with. The AYAs are dealing with a major, life-changing circumstance during a period of their life when they are also dealing with other huge changes and developmental milestones. ABCT provides a variety of information to this patient community on treatment for depression, anxiety, sleep, insomnia and other areas that AYAs may struggle with. We also offer a clinical directory in which people looking for cognitive behavioral treatment can find providers in their area. Some of these providers specialize in working with people and their families who are coping with cancer, and some of them specialize in working with young people coping with a range of concerns.

Reaching Out for Help

RWHC: What advice would you give an AYA or family member who may feel uncomfortable or unsure about reaching out to a cognitive behavior therapist for help?

TS: Normalizing it is important. Many AYAs dealing with cancer experience some sort of cancer-related behavioral health issue. Issues may not happen right away. They may come up at some point during treatment or when they’re recovering from cancer treatment and trying to get back to their lives, and even beyond. In fact, a lot of AYAs report that they experience struggles after cancer treatment is over.

It’s also normal for family members – especially caregivers – to experience a behavioral health concern, at any point after the AYA’s cancer diagnosis.

Behavioral health concerns can range from having more difficulty adjusting to or coping with the cancer than one might expect, to ongoing feelings of sadness, anxiety, worry, panic attacks, persistent insomnia, increased substance use, and other symptoms. If a distressing behavioral health symptom sets in and doesn’t let up, if a behavioral health symptom becomes really disruptive to day-to-day life, or if a person starts worrying that they might hurt or kill themselves, those are signs to reach out to a qualified therapist for help.

It’s perfectly okay to reach out to people who can help, including cognitive behavior therapists, no matter what. Cognitive behavioral therapists are used to working with people dealing with these kinds of concerns; and the sooner someone reaches out, the sooner a plan can be developed to help the person feel better. Be sure to carefully check the credentials of the therapist. They should be licensed to practice in the patient’s state and should be listed as members of professional organizations, such as ABCT or the American Psychological Association.

HealthWell’s Cancer-Related Behavioral Health Fund is a wonderful initiative for insured people who want to reach out to a cognitive behavioral therapist, but who are struggling with finances.

Fast Facts: Adolescents and Young Adults with Cancer

The following information has been excerpted from the full ABCT fact sheet, written by Glynnis McDonnell, Doctoral Candidate in Clinical Psychology at St. John’s University and a Psychology Intern with the University of Tennessee Health Sciences Center & St. Jude Children’s Research Hospital.

A cancer diagnosis can be upsetting for individuals of any age; however, the effects of a cancer diagnosis and treatment may be especially upsetting for people diagnosed as adolescents and young adults (AYAs). This period involves rapid physical and psychosocial development, and a cancer diagnosis can interrupt these developmental processes:

  • Treatment often leads AYAs to take a large amount of time off from school or work, affecting career and education plans.
  • Treatment can make the formation of romantic relationships difficult due to factors such as body image concerns, limitations placed on one’s activities, etc.
  • Treatment can lead to infertility, interfering with the ability to start biological families.
  • A potentially life-threatening illness can be especially startling for AYAs:
    • AYAs likely have a better understanding of the seriousness of their illness than child patients but are often unprepared to process the meaning of a serious disease as effectively as older patients.
    • AYAs are still in the process of developing a stable sense of self. Therefore, diagnosis and treatment of a serious illness during this period could have a different psychological impact than it does for older adults.

There is growing evidence that cognitive behavior therapy (CBT) is an effective treatment for many of the psychological difficulties faced by AYAs. CBT is a form of psychotherapy that draws upon the connections among one’s thoughts, behaviors and emotions. It cannot change the fact that this young person has had to cope with a difficult diagnosis, but it can help ease the related difficult feelings, including worry, sadness and guilt related to the cancer experience. It can also help the AYA process traumatic aspects of the cancer experience.

A Message from Our Sponsor

As the founding sponsor of Real World Health Care, the HealthWell Foundation is committed to helping patients get the medical treatments they need, regardless of their ability to pay. We’ve seen first-hand how financial distress can impact the health and lives of individuals and families. Cancer patients with behavioral health conditions are particularly hard hit; according to the American Society of Clinical Oncology (ASCO), patients with some forms of cancer incur $8,000 more per year in health care costs than cancer patients without behavioral health conditions.

In keeping with our mission, we are now accepting applications for our recently launched Cancer-Related Behavioral Health (CRBH) Fund, specifically for treatment-related behavioral health issues in cancer. The Fund provides financial assistance to individuals with a diagnosis of cancer to help with cost-shares (deductibles, coinsurances and copayments) for covered services rendered by behavioral health providers (psychiatrists, psychologists, clinical counselors, and licensed social workers).

We invite readers of Real World Health Care to learn more about our CRBH Fund and how you can support it by visiting

Read this article online at Real World Health Care.