Obesity and Fatty Liver Disease: The Link Between Metabolic Disorders and NASH

Real World Health Care_____________________________________________________________________

Sammy Saab, MD, MPH, AGAF

by Real World Health Care Editorial Staff

For decades, the general public has been aware of the many health risks of being obese, including diabetes, heart disease and certain cancers. However, many are not be aware that obesity is also linked to liver disease: specifically Non-Alcoholic Fatty Liver Disease (NAFLD), which in its most severe form, becomes Non-Alcoholic Steatohepatitis (NASH).

NAFLD/NASH Defined

According to the American Liver Foundation, it is normal for the liver to contain some fat. However, if more than five to ten percent of the liver’s weight is fat, then it is considered to be a fatty liver (steatosis).

NAFLD is the build up of extra fat in liver cells that is not caused by alcohol. It is the most common form of liver disease in children and has more than doubled in the past 20 years, a statistic that’s important to remember during September’s National Childhood Obesity Awareness Month.

The more severe form of NAFLD is NASH, which causes the liver to swell and become damaged. NASH tends to develop in people who are overweight or obese, or have diabetes, high cholesterol or high triglycerides. However, some people have NASH even if they do not have any risk factors.

Difficulties Diagnosing NASH

NASH often has no symptoms and people can have the disease for years before symptoms occur, making the disease difficult to diagnose.

“Fatty liver is quite common in the United States,” said Sammy Saab, MD, MPH, AGAF, professor, Medicine and Surgery, Head, Outcomes Research in Hepatology, David Geffen School of Medicine, UCLA and co-chair of the National Medical Advisory Committee for the American Liver Foundation. “The hard part is identifying who has simple fat that doesn’t cause serious liver problems and who has the more serious NASH.”

Dr. Saab went on to note that the vast number of people with fatty liver makes it impractical to diagnose NASH using biopsy, an invasive technique with risks including pain, bleeding and sampling errors. Instead, he said that imaging and blood tests are the best and most non-invasive methods for detecting NASH.

He pointed to emerging imaging modalities such as ultrasound or magnetic resonance elastography, which can identify scar tissue and fibrosis, important predictors of outcomes in fatty liver. He also noted that blood tests, including AST-to-Platelet Ratio Index (APRI) and Fibrosis-4 (Fib4), can be used to easily estimate the chances of a patient having advanced fibrosis.

Treating Underlying Metabolic Problems

According to Dr. Saab, NASH challenges don’t end at the diagnosis stage.

“NASH can be a frustrating disease to treat,” he said. “First, we must identify and treat the underlying metabolic problem, whether that’s obesity, diabetes, hypertension, high cholesterol, or a combination of these. If someone has poorly controlled diabetes, we recommend they get their blood sugar in line. If they are overweight, we recommend diet and exercise. But losing weight is difficult unless the patient is very determined, especially with the calorie-dense American diet.”

Because NASH patients typically have co-morbid conditions, an integrated, multi-disciplinary approach to care is crucial. To treat NASH patients, Dr. Saab regularly works with UCLA colleagues in primary care, endocrinology, nutrition, weight control, diabetes management and bariatrics, among other specialties.

“The idea of a hepatologist treating NASH by themselves is naïve…it must be a team effort,” he said. “Additionally, specialists in other medical fields need to increase their awareness of the links between metabolic issues and fatty liver disease so they better understand the significance of the problem and the importance of referring patients at risk for evaluation.”

Supporting the NASH Patient Community

Dr. Saab’s interest in fatty liver disease has led him to conduct clinical trials on NASH treatments and research related topics including the impact of obesity on liver transplant patient survival, safety and efficacy of liver transplants for NASH patients, food addiction in liver transplant recipients, and ethnic variations for fatty liver disease (NASH is the most common reason for liver transplants among Latina women).

He also holds a yearly seminar for patients and their caregivers to learn more about fatty liver disease and is in the process of publishing educational resources for both patients and caregivers with information on what fatty liver disease is, what it means, and what happens when patients have it.

More information is also available through the American Liver Foundation (ALF), which provides patients, family members and the general public, as well as health care professionals, with direct access to NASH education and support services through a variety of programming initiatives, including webinars, in-person education programs, published resources, and online education. ALF’s National Helpline, 1-800-GO-LIVER serves as an additional resource for information and support, and ALF offers an online support group for people affected by NASH.

Read this article online at Real World Health Care.

From CancerCare: The Importance of Cancer Caregivers in Medical Settings

Real World Health Care_____________________________________________________________________

Mary Hanley, LMSW

by Mary Hanley, LMSW

Oncology Social Worker | CancerCare

Being the primary caregiver to a cancer patient is a long, intense experience both physically and emotionally. The cancer caregiver often experiences all the highs and lows of the patient’s cancer journey and is there to observe every detail, for better or for worse. This makes the caregiver a beacon of information on the patient’s physical and emotional well-being during cancer treatment. Yet, caregivers often express feeling ignored by their loved one’s medical team or excluded from the patient’s treatment planning. Considering that cancer caregivers often play second-fiddle to their loved one with cancer in other areas of life, it is imperative that the caregiver feels included for continued success in their role.

A qualitative study of patients and their caregivers suggests that fostering appropriate involvement of caregivers and family members is an important factor for a strong provider-patient relationship.1 Doctor’s visits can be overwhelming and the patient may forget to ask a question. Caregivers are able to observe external signs of illness and can improve communication with their loved one’s health care team. It is crucial for accurate medical treatment of the patient that the caregiver is given the space to report any observations and to be fully acknowledged by medical personnel.

The caregiver also brings their own issues and concerns into the room with them. The average caregiver is 53 years old and 60 percent of cancer caregivers are caring for someone who is 65 years old or older.2 The caregiver is more than likely dealing with age-related health changes in addition to the physical and emotional demands placed on them through caregiving. Furthermore, while the average caregiver is in good physical health, the impact of their loved one’s diagnosis has an equal, sometimes even greater, emotional impact on the caregiver as the patient. When a caregiver isn’t acknowledged by medical personnel, it also can lead to the caregiver feeling ignored or undervalued. One nationwide study in 2015 found that only 29 percent of caregivers are asked about their own care by medical professionals.2

There are a few simple steps to bridge the gap between the medical team and the caregiver. Acknowledgment of the caregiver is the first and most important step. Being respectful of and being genuinely engaged in discussions of the caregiver’s wellbeing can help the caregiver feel important and needed. Such moments are good opportunities for doctors to assess if the caregiver is experiencing any physical complications from caregiving activities, showing any signs of burnout or emotional distress, or needs help navigating extended time away from work. If any of the aforementioned issues are presented, caregivers can often benefit from a referral to the treatment center’s oncology social worker, a patient navigator, a financial coordinator or to mental health services.

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 www.cancercare.org or call 800-813-HOPE (4673).

References

1 Kimberlin, C., Brushwood, D., Allen, W., Radson, E., & Wilson, D. (2004). Cancer patient and caregiver experiences: Communication and pain management issues. Journal of Pain and Symptom Management, 28(6), 566-578. doi:10.1016/j.jpainsymman.2004.03.005

2 National Alliance for Caregiving (2016). Cancer caregiving in the U.S.: An intense, episodic, and challenging care experience. Self-published. Retrieved from https://www.caregiving.org/wp-content/uploads/2016/06/CancerCaregivingReport_FINAL_June-17-2016.pdf.

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Help for Pediatric Cancer Patient Caregivers

Real World Health Care_____________________________________________________________________

Julie Komanetsky

By Julie Komanetsky, vice president, Patient and Family Services, The National Children’s Cancer Society

By definition, parents are their child’s number one caregiver. However, when that child has cancer, “caregiving” takes on a completely new meaning and many new challenges.

Consider the journey: A child is born, and the proud parents wait for a little cry.  They count ten fingers and ten toes and they give thanks for the healthy addition to their family.  Cancer is the farthest thought from their minds.  After all, cancer is something that happens to adults—not children, or so they think.

The symptoms are different based on the child and the type of cancer, but parents tell us stories of trusting their intuition when their child ends up sick and doesn’t seem to recover after a few days.  They push for testing beyond what’s normal.  They know something isn’t right.  Still, when the doctor walks into the room to tell them that their child has cancer, parents are devastated.

Caregiving Takes on New Meaning

Cancer is a diagnosis that impacts the entire family, oftentimes sending them into a tailspin as they adapt to their new role as cancer patient caregivers.   One mom, whose son Zach was diagnosed with rhabdomyosarcoma at age 2, told The National Children’s Cancer Society (NCCS):

“Those first few days after his diagnosis, I couldn’t eat, couldn’t sleep, and couldn’t think. I was afraid he wouldn’t live to see age three.”

Her reaction is common.  Parents are faced with the immediate need to learn about their child’s cancer and treatment plan.  They are further challenged with maintaining their households, taking care of their other children, missing work and ensuring the family’s financial stability.  And one of their most difficult struggles, yet most basic needs, is simply getting their child to and from treatment.

And then they find NCCS.  Most often, they are referred by a social worker at the hospital for help with the financial burden of childhood cancer, but soon discover we can also help with their emotional struggles through our Family Support Program.

Supporting Family Caregivers

The NCCS works tirelessly and compassionately to support families making their way through the daunting world of childhood cancer.  We know how to navigate this world, helping families get where they need to be—physically, financially, and emotionally—to give them hope, and to give their children the best possible shot at survival.

Our dedicated staff is here to provide practical and emotional support to parents, caregivers and survivors.  Once a family is referred to the NCCS, a case manager is assigned to them who stays by their side throughout their cancer journey.  Our case managers are trained professionals who help during difficult times, encourage parents to advocate for their child, provide referrals, and perhaps most importantly, they listen when a parent just needs to talk, and they comfort when a parent just needs to cry.

Hazel

Our support is critical for families like Hazel’s.  Hazel is the youngest of four and was diagnosed with leukemia when she was two.  She recently turned four years old and continues to receive chemotherapy at a hospital two hours from home during the maintenance phase of her treatment.  Hazel’s dad, Nat, recalls the past year as the toughest of his life, describing it as excruciatingly hard for his entire family, as cancer changed their lives entirely but never destroyed their family bond.  Nat shares:

“My family is stronger today because of our journey with cancer, and here’s why: people.  The people we have met during this process have been unforeseen blessings, providing comfort, support, love and respect at every turn.  We have met doctors, nurses, administrative staff, individuals and professionals from all walks of life that helped provide the stilts to prop my family up as we struggled to manage our situation.  Some of the most cherished people have been representatives from The National Children’s Cancer Society.”

At The National Children’s Cancer Society, we create a clear path through the maze of childhood cancer and survivorship to help families stay strong, stay positive and stay together.  Because no family should have to go through childhood cancer alone.

About the Author

Julie Komanetsky has tirelessly and compassionately served with The National Children’s Cancer Society (NCCS) for more than 20 years. She is currently the Vice President of Patient and Family Services, overseeing all NCCS programs, taking a “no matter what” approach, to create a clear path through the labyrinth of childhood cancer and survivorship to help families stay strong, stay positive and stay together. She is a member of both the Association of Pediatric Oncology Social Workers and the Grant Professionals Association.

Read this article online at Real World Health Care.

Where Does NASH Stand on the Global Public Health Agenda?

Real World Health Care_____________________________________________________________________

Donna Cryer, JD

This week, Real World Health Care continues our series on Non-Alcoholic Steatohepatitis (NASH) by featuring an interview with Donna Cryer, JD, president and CEO of the Global Liver Institute (GLI). Cryer founded the GLI on the 20th anniversary of her liver transplant due to an autoimmune disease. Today, four years later, GLI stands firm in its mission to improve the lives of individuals and families impacted by liver disease by promoting innovation, encouraging collaboration and scaling optimal approaches to help eradicate liver disease.

A Vision for Liver Health

Real World Health Care: What was your vision when you set out to create the Global Liver Institute?

Donna Cryer: The GLI was designed to be patient-centric from the start. I wanted to make sure that other liver disease patients had access to the type of innovations and treatments that saved my life. At the time, I didn’t see a lot of awareness around liver disease and liver health. There was a stigma attached to having liver disease, and there still is to a degree.

Our vision is for liver health to take its place on the global health agenda commensurate with its prevalence and impact. Half a billion people have liver disease, but the public health agendas for research, policy, and public knowledge and support don’t reflect the scope of the disease.

We want to change the culture around liver disease to reduce stigma, change policies so patients have better access to care, and change health care delivery systems and reimbursement frameworks so new treatments get to the patients who need them.

We also want patients and their families to become better advocates so they can work more effectively to raise visibility and help change policy. To that end, we recently created an Advanced Advocacy Academy, which connects liver patients and family members with the information, skills and opportunities they need to effectively advocate for liver health.

NASH Council

RWHC: How does the GLI’s NASH Council help support patients with this advanced form of fatty liver disease?

DC: NASH is unique, partly because there are none of the underpinnings we typically see for other disease states. While research is starting to progress, the NASH patient community lacks education materials, support groups, and awareness efforts — despite the fact that one in four people around the world are estimated to have some form of fatty liver disease and 16 million people in the United States have NASH.

We created our NASH Council to fill that gap and to help define the NASH community more broadly than has been done with other liver diseases. Because NASH and other fatty liver disease patients often have concurrent metabolic conditions, NASH advocacy can’t exist in a silo. That’s why our NASH Council is reaching out to the obesity, diabetes and cardiovascular communities and conducting workgroup calls focused on patient education, clinical workflows and policy. Our 50-member council includes organizations with exponentially large reach, including the American College of Physicians and the American Heart Association.

Our latest efforts center on determining lifestyle interventions for NASH patients. We’re working with physicians in hepatology, diabetes, cardiovascular and primary care to delineate how and by whom patients with NASH and other fatty liver diseases can be diagnosed earlier and referred to the appropriate specialist in a timely manner. Truly integrated care can’t come fast enough.

Early NASH Disease Screening

RWHC: Why is early screening so important for NASH patients?

DC: If fatty liver disease is found early, before it has a chance to cause significant fibrosis, the disease can be effectively reversed through lifestyle interventions, such as losing seven to ten percent of your body weight. Unfortunately, most NASH patients are diagnosed in advanced stages of the disease, when fibrosis and cirrhosis have caused extensive cellular damage. At that point, the only treatment option that currently exists is transplantation, which isn’t feasible for this large patient population; there just aren’t enough organs to go around.

Currently, the only way to truly define NASH is through a liver biopsy, which is both invasive and risky. In addition, because a biopsy may not capture the affected portion of the liver, it can’t be considered a gold standard. Screening therefore needs to include metabolic syndrome risk factors and non-invasive technologies such as imaging and liver enzyme analysis.

Promising NASH Developments

RWHC: Are there any screening or treatment approaches on the horizon that give you hope?

DC: In terms of screening, there are many existing imaging technologies and several more in development including large validation efforts by NIH in the US and consortia in the UK/Europe. One strategy that holds promise is simple: Moving existing hospital imaging capabilities into diabetes clinics. Just roll them down the hall! This would help to speed diagnosis for the estimated 80 percent of Type 2 diabetics who have fatty liver disease.

In terms of NASH treatment, there are several transformative candidates currently in Phase III trials that should be approved within the next year. This development is particularly exciting because the various therapies target different mechanisms. Some directly reduce fibrosis, while others reduce fat accumulation or overall inflammation. Some candidates address more than one mechanism, which will allow for greater therapy personalization and greater likelihood that a therapy will be effective for a wide population.

Therapies for fatty liver disease represent one of the most robust innovation areas in health care today. At a time when so many diseases still do not have cures, this outpouring of research holds hope and promise for liver patients like me.

Read this article online at Real World Health Care.

Calling for A Culture of Caring

Real World Health Care_____________________________________________________________________

Ruth Lippin, LCSW, JD

When someone becomes ill with a chronic disease such as cancer or multiple sclerosis, theirs is not the only life that changes. Indeed, their illness can impact friends, co-workers, and most particularly, their family members. Nowhere is that impact felt more strongly than by the family caregiver: the person whom the sick loved one counts on to provide the aid, comfort and care they need to supplement the professional care they receive from their health care providers.

According to Ruth Lippin, LCSW, JD, the role of the family caregiver has evolved over the past century. Lippin, a cognitive behavioral therapist who also runs a geriatric care management company, said that in previous generations, extended families lived together longer, making it easier for individual family members to “pitch in” when help was needed.

“Today, our country places a higher value on individualism,” she said. “We’re no longer a culture in which we take care of each other. Asking for or needing help is often seen as a sign of weakness instead of being embraced. People with chronic illnesses are vulnerable, and they need the protection of our society.”

Reluctant Patients, Resentful Caregivers

Taking care of a loved one with a serious illness changes the family dynamic, especially when the caretaker is an adult child, said Lippin.

“It’s a complete transformation of the relationship from one of being cared for to one of having to be the caretaker,” she explained. “The ill parent may be reluctant to be taken care of, and the adult child often isn’t used to asserting their authority or conducting the type of care tasks that aren’t part of the ‘normal’ course of development for a parent/child relationship.”

“Consider an adult child whose parent has Parkinson’s disease and should no longer be driving,” she offered. “How do they cope with the worry that their parent may hurt themselves or others while driving? How, as their child, do they assert authority to take away the keys?”

Lippin said that it’s not uncommon for caregivers to feel guilty, stressed, anxious and depressed while caring for a loved one. Resentment also can grow quickly, especially if the family caregiver feels “forced” into taking care of their loved one or does not receive the support they need from siblings or other family members.

“Caregivers face an internal conflict about exactly what one owes another person by virtue of being a blood relative or having loved them, in the case of a well spouse caring for an ill spouse,” Lippin explained.

Financial stress also can take its toll if the ill family member can no longer work, or if the caretaker has to leave their job or cut back on hours to provide the care their loved one needs.

“I had a client with a thriving freelance business who ended up on Medicaid while taking care of her elderly mother because she could no longer work the hours she needed to support herself financially,” Lippin said. “I would much rather have a loving, doting aide caring for me than a resentful family member. Unfortunately, a family caregiver is often the only solution because hiring a live-in caretaker or full-time aide is cost-prohibitive for most people.”

Setting Boundaries and Seeking Help

Lippin said that it’s crucial for family caretakers to set boundaries to avoid emotional burn-out and the negative biological affects that too much anxiety and depression can have on their central nervous system.

“I often see caretakers who stop taking care of themselves while they are taking care of a loved one,” she said, noting that 30 percent of caregivers die before their ill loved one. “They may skip doctor’s appointments because they can’t or won’t leave their loved one alone. Or, they may stop taking their own medications if finances become an issue. One client’s very ill spouse outlived her by many years because she stopped taking care of herself to care for him.”

Lippin is adamant that caregivers need to take care of themselves as well as their sick loved one.

“Do something for yourself a couple times a week,” she suggested. “Meditate, take a yoga class or join a support group with people who understand exactly what you’re going through. Realize that you aren’t in this alone and that you shouldn’t be expected to give and give without receiving some care of your own.”

“Caretakers also can benefit from professional help available through a therapist,” she said. “A professional therapist will provide a compassionate ear and listen to their concerns without passing judgement. Together, the therapist and caretaker can formulate a plan to help them decrease their stress, anxiety, depression or other mood disorders.”

Even if seeing a therapist or hiring an aide for their loved one is not an option financially, there are a range of free online and in-person support groups and self-help information available said Lippin, pointing to resources available through her professional society, the Anxiety & Depression Association of America.

Through the ADAA website, caregivers can learn more about mental health signs and symptoms, read tips for restoring mental wellness, and join a free, anonymous online support group.

“Seek help,” Lippin urged caretakers. “As a caretaker, you need someone caring for you too.”

Read this article online at Real World Health Care.

NASH: A Disease without Symptoms but Lots of Hope

Real World Health Care_____________________________________________________________________

Wayne Eskridge

by Wayne Eskridge, President & CEO, Fatty Liver Foundation

What if you had a liver disease but nobody told you until it was too late?

Typically, nonalcoholic fatty liver disease (NAFLD) and nonalcoholic steatohepatitis (NASH) are silent diseases. They have no symptoms. Even if cirrhosis has developed, there are often no symptoms until the liver has become so damaged that the only option is a liver transplant.

Early screening for NASH is essential, but obstacles abound. While there is a quick, easy and economical method to screen for fatty liver disease, it is not widely available and screening in the absence of symptoms is often not part of standard medical practice policy. Medical coverage for the test also may not be available if the patient isn’t sick or doesn’t have symptoms.

Fatty Liver Foundation Screening Project

The Fatty Liver Foundation advocates for early screening. Our plan is to deliver liver care screening for the estimated 40 million co-morbid diabetes/NAFLD/NASH patients. This patient group is our initial target for screening because up to 70 percent of type 2 diabetics have undiagnosed liver disease. The project’s long-term goal is to have 400 testing locations seeing one million patients a year.

 

 

The screening project is currently in its pilot phase. The first installation is in the greater Houston area and the purpose is to gather real world data on self-selected patients and to test methods and procedures to provide guidance to the larger project to follow. The study is being conducted as a formal study which can be read here as NCT03726827 on ClinicalTrials.gov.

State of Liver Research

While attending the 2018 meeting of the American Association for the Study of Liver Diseases (AASLD), I was struck by the sheer volume of research going into NAFLD/NASH/cirrhosis and how the evolution of new tools and probes coming from the broader arena of basic science is helping us along our journey to understand the liver.

The black box nature of many of the liver’s functions is giving way to a real understanding of the specific chemical reactions between and within the cells. The study of lipids within the liver and body-wide is burgeoning, as fatty acids are both foundational molecules and dose-related substances involved with disease. The study of cellular response – such as how stellate cells are affective by different molecules — is robust.

Stepping up a level from how molecules work, researchers also are studying how the systems of body processes interact in ways that either lead toward health or toward dysfunction and illness. For example, scientists are investigating how liver fat responds to manipulation of certain thyroid hormones.

Then, we step out to see how body-wide functions like inflammation, wound management, tissue health, immune response and other processes lead to liver damage or may be recruited to promote healing. Here, the issue of comorbidity comes into focus as we look at the liver’s relationship with cardiovascular and diabetic disease, as examples.

The meeting also showcased the significant work being undertaken on non-invasive markers for primary care-level triaging of patients with active disease, but who present as symptomatic. One of the most interesting developments was the documentation of the role that Fib-4 might play in the process. There is growing evidence that Fib-4, and several other blood-based candidates used as filters for screening, can help to determine referral to a specialist.

As a patient, being able to see the depth and breadth of the effort whose goal is to save my life, and that of the millions of patients like me, was both humbling and exhilarating. The knowledge that research will lead to solutions makes the day-to-day easier to bear and gives us patients a reason to find hope.

About the Fatty Liver Foundation

The Fatty Liver Foundation is dedicated to identifying asymptomatic, undiagnosed Americans with liver fibrosis or early cirrhosis caused by fatty liver disease, and to educate them on the lifestyle changes needed to halt or minimize progression of the disease. Here is a link to a brief video about the Foundation. Founder and CEO Wayne Eskridge was diagnosed with cirrhotic NASH in 2010 and since then has been dedicated to learning as much as possible about the disease and to helping other liver disease patients. For more information, visit the Fatty Liver Foundation website, or connect via Twitter.

Read this article online at Real World Health Care.

The Cascading Effect of Migraine Disease

Real World Health Care_____________________________________________________________________

Jim Carleton

By Jim Carleton for the Association of Migraine Disorders

“I never signed up for this”

Quote from a migraine sufferer’s fiancée when he ended the engagement.

How is it possible that such a devastating illness in all its expressions could not have far-reaching, negative effects in all related areas of a migraine sufferer’s life? It’s not, of course. Only recently have we begun to see research that looks at subjects like family burden and the corollary disruption that episodic and chronic migraine causes in the lives of sufferers. Very few of us lead totally isolated lives, devoid of familial connections and other work and relationship associations. More often, the opposite is true. The vast majority of people are interconnected with others through family, relationships and work; these relationships are all compromised by migraine suffering. That’s a lot of people.

Migraine Affects More Than the Patient

In the United States alone, we estimate that there are 36 million migraine sufferers. If we allow ourselves some statistical latitude and cede that each sufferer has two relationships affected by their migraines, the numbers grow exponentially. For the purpose of this argument “collateral” means a person in some level of a relationship with the migraine sufferer. Following this line of reasoning, there are about 108 million people, including the sufferers, whose lives are negatively impacted in a variety of ways. The population of the United States is 319 million at last count. Again, following our assumptions, 34 percent of the U.S. population has their lives disrupted to some degree, by migraine disorders. Remember, this assumption is based on two collaterals only. Most people have more than two relationships. So, if that is the case, the number affected would rise accordingly.

Admittedly, that is a pretty astonishing number. One may question what does “disruption” mean? Migraine sufferers and those that live and work with them would not have any problem answering that question. So, in deference to the two-thirds or so of the U.S. population that may not understand the nature and level of problems caused by migraine attacks and experienced by collaterals, what follows is a less than a complete list. Broken relationships, lost jobs and income, family arguments, emotional distance, canceled family events and vacations, friendships lost, loss of self-esteem (both sufferers and collaterals), anxiety and a host of depressive symptoms, constant worry, and feelings of inadequacy. This list could be expanded greatly, I am sure. But one consequence stands out for me personally in my life with an episodic migraine sufferer: the frustration experienced when I am forced to stand by and watch my loved one’s anguish while being unable to help her in any way.

This brings us to the bottom line: migraine suffering is not limited to the migraine sufferer alone. The misery spreads throughout the lives of associated individuals, not unlike other chronic, disabling conditions. At present, with about one-third of our country’s population touched negatively by this neurological illness, why is so little being done to search for a cure? What will it take?

Some interesting research has been done in the area of caregiver stress. If you would like to read some interesting articles as a follow-up, consider:

Caregiver stress focusing on self-care
http://adrenalfatiguesolution.com/caregiver-stress/

Family support essential to surviving migraines
http://www.practicalpainmanagement.com/patient/conditions/headache/family-support-crucial-surviving-chronic-migraine

CaMEO research studies the burden of migraine on families, among other variables
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4430584/

The Association of Migraine Disorders strives to expand the understanding of migraine and its true scope by supporting research, education and awareness.

Read this article online at Real World Health Care.

First in Class Migraine Approval

Real World Health Care_____________________________________________________________________

Emily Burke

By Emily Burke, PhD, Director of Instruction, Biotech Primer Inc.

Editor’s Note: June is National Migraine and Headache Awareness Month. Medical experts don’t fully understand what causes migraines, making the condition difficult to diagnose and treat. This week, Real World Health Care delves into the science behind migraine and its treatment, with this article written by Emily Burke of Biotech Primer. Next week, we’ll bring you insights from the perspective of a family caregiver supporting a loved one with chronic migraine.

Migraine sufferers gained new hope last year when the FDA approved three new first-in-class drugs that prevent the onset of migraines, and significantly reduce the number of migraine days in difficult-to-treat (those that have failed 2 to 4 prior treatments) patient populations. In some patients dubbed “super responders,” migraine occurrence went from several times a month to no occurrence for six months. This is a big breakthrough that will have significant impact on the quality of life for migraine suffers who have not been able to find other forms of relief. Let’s take a look at the science behind migraines and how these new treatments work.

Attack of the Migraine

As many as 36 million Americans suffer from migraines—about 12 percent of the population. More than just a headache, migraines often include symptoms like intense pain, nausea, and extreme sensitivity to light or noise. They can last anywhere from a few hours to days on end. Episodes may be as frequent as several times a month, or as infrequent as a few times a year.

There are three distinct parts of a migraine episode; however, not all migraine sufferers experience these phases with the same intensity. Each set of symptoms is unique to the individual, and can include prodome, aura, or postdome phases.

  • Prodome occurs in the hours or days before a migraine attack. It includes mood disturbances, stiff muscles, and sensitivity to smells or noise.
  • Aura is the period just before the severe pain attacks. Visual distortions are the most common symptom, with sensory or motor disturbances potentially occurring as well.
  • Postdome happens after the actual headache and includes symptoms such as lingering pain and cognitive difficulties.

The Science Behind the Episode

While the exact cause is largely unknown, there are a few theories:

  • Brain Stem Changes: Research by the Mayo Clinic (Rochester, MN) suggests migraines derive from changes in the brain stem and its interaction with the trigeminal nerve. The trigeminal nerve supplies feeling to the face and is considered a pain-associated pathway in migraine attacks.
  • Lowered Serotonin Levels: Another area of active research involves the neurotransmitter serotonin. Serotonin is most often associated with mood—antidepressants known as serotonin reuptake inhibitors increase levels of serotonin in the brain. This neurotransmitter is also implicated in migraine pain pathways, with levels dropping during an attack.
  • Hormonal Link: Migraines are more common in women than men, so a hormonal link may be tied to the causality. There is often a reduction in symptoms after menopause.
  • Glutamate Accumulation: In recent years, a few gene variations that appear to increase the risk of developing migraines have been identified through genome-wide association studies. Two of these genes result in increased levels of the neurotransmitter glutamate, suggesting that accumulation of glutamate in synapses may be a trigger.

This Just In

The hot new kid on the block is calcitonin gene related peptide (CGRP) inhibitors. CGRP spikes during migraine attacks and is thought to play a role in the brain pathways that process pain. The exact molecular mechanism of how the CGRP spike is related to migraine onset is not yet fully understood, but CGRP is thought to sensitize nerves in the face, neck, and jaw, as well as alongside blood vessels surrounding the brain. A 2002 study provided strong evidence of a key role for CGRP in driving migraines. Injecting volunteers who were migraine-prone with the CGRP peptide induced a migraine within hours; injecting volunteers who were not migraine-prone resulted in a mild headache at worst. These studies helped to form the scientific basis for this new class of migraine drugs. The first approved, erenumab, is a monoclonal antibody (mAb) that blocks activation of the CGRP receptor. The antibody binds the receptor but does not activate it, and in so doing, prevents CGRP from activating the receptor.

Fremanezumab and galcanezumab, the other CGRPN inhibitors approved last year, are mAbs directed at CGRP itself. The idea is for the mAb to “mop up” CGRP before it reaches the receptor and triggers a migraine.

Cocktail Fodder: A Headache of the Past

We sometimes blame migraines on the stress of modern living. In some cases, stress is a trigger, but the headaches are hardly a modern phenomenon. Descriptions consistent with migraines are found in the ancient Egyptian medical text Ebers Papyrus, dating from 1550 B.C., as well as Hippocratic texts dating from 200 B.C.

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.

Lung Cancer: Being a Better Caregiver

Real World Health Care_____________________________________________________________________

Deborah P. Brown

This week, Real World Health Care continues our series on caregiving by speaking with Deborah P. Brown, Chief Mission Officer of the American Lung Association. Brown oversees strategic planning and implementation of the Association’s health promotions programs, advocacy efforts and research programs. We talked about lung cancer programs and services offered by the Association for both patients and their caregivers.

Lung Cancer a Top Priority

Real World Health Care: The American Lung Association has a broad lung-health mandate. Where does lung cancer stand in terms of your overall mission?

Deborah Brown: The American Lung Association envisions a world free of lung disease. Our mission is to save lives by improving lung health and preventing lung disease, as well as to reduce the burden of lung disease on patients and their families. Lung cancer is a priority for the Association, and supporting caregivers is an important aspect of what we do.

Support for Lung Cancer Patients and Their Caregivers

RWHC: How does the American Lung Association help lung cancer patients and their caregivers?

DB: Being diagnosed with lung cancer is difficult. It quickly becomes overwhelming as people process their diagnosis, cope with their emotions and try to navigate the health care system.

We support lung cancer patients and their caregivers by providing comprehensive educational content at www.lung.org/lung-cancer. Our content navigator tool tailors information to each person’s journey, whether they’re a patient, caregiver or health professional. We also offer a toll-free Lung HelpLine at 1-800-LUNGUSA that provides expert bilingual guidance from nurses and respiratory therapists.

Because lung cancer patients and their caregivers value being able to speak directly with others who are in their shoes, we offer a free online support community. It’s a wonderfully caring and kind community of people facing similar challenges.

We also offer a number of resources dedicated to caregivers, including articles, videos, tips sheets and more. These resources cover everything from how to talk about lung cancer and cope with your emotions to self-care tips and how to prepare for the future.

Caregiving is Emotionally and Physically Draining

RWHC: How can family caregivers address the challenges they face when caring for a loved one who has lung cancer?

DB: Being a caregiver in any capacity can be emotionally and physically draining. We believe that family and friends can be better caregivers and advocates by understanding their loved one’s journey and their needs throughout the ups and downs of treatment. Because lung cancer patients are often immuno-compromised, it’s important for caregivers to stay as healthy as possible and up-to-date on their flu shots and other vaccines. And it almost goes without saying: they should never smoke around a lung cancer patient.

When caring for a loved one with lung cancer, it’s important to keep in mind that anyone can get lung cancer, regardless of prior smoking history. However, if the patient has smoked in the past, they may feel guilty and ashamed. Caregivers should reiterate that they are not to blame for their cancer and that they need to let those feelings go.

Caregiving Tips

RWHC: What sort of advice would you give to family caregivers?

DB: Let your loved one know you love them, you are there for them and you are ready to help them, no matter what. Learn as much as you can about lung cancer so you are better able to advocate for them and help them navigate the health care system. The priority is making sure they get the best possible treatment they can.

Understand your loved one’s boundaries. Some patients want their lives and activities to go on as normal and don’t want a lot of help, while others may feel overwhelmed and need assistance. Respect the wishes of your loved one so you can give them both the assistance and the space they need. Open communication is key. However, be mindful of your role. Your loved one may or may not want to tell people about his or her cancer. Do not share information meant to be kept private

We offer a full range of caregiver tips on our web site, and I encourage your readers to visit the site to get more detail. They can learn about the importance of:

  • Keeping appointments and following treatment instructions.
  • Getting to know the patient’s care team.
  • Letting the patient speak first during doctor appointments.
  • Helping the patient stay organized.

Taking Care of the Caregiver

RWHC: How can someone be a better caregiver?

DB: Accept that it’s normal to feel a wide range of emotions. While a positive attitude can improve both your and your loved one’s moods, it can be easier said than done. If you have a hard time staying positive, confide in someone you can trust. Talking about your feelings with a therapist or social worker specializing in cancer may be beneficial.

As mentioned before, stay healthy by staying up to date on your doctor visits and vaccinations. Get plenty of sleep, eat a balanced diet and try to do some form of physical activity every day. Allow yourself to take breaks from caregiving to recharge yourself.

Ask for help if you’re overwhelmed. Use your support system to help you run errands or do chores. Stay in touch with family and friends. Join a support group for caregivers. Some people find strength and support in religion and faith-based organizations.

Remember that every question you have is worth asking. Sometimes medical providers don’t bring up topics because they aren’t sure you want to hear about them. Don’t wait for the doctor to start all of the conversations. Ask all of your questions and make sure they get answered in a way you understand.

Read this article online at Real World Health Care.

Talk about your Health Care Choices before you’re Faced with a Crisis

Real World Health Care_____________________________________________________________________

Sjogrens

By Jon Radulovic, Vice President, Communications, National Hospice and Palliative Care Organization

A family is gathered by the bedside of a loved one who has been seriously ill, and now is likely near the end of life. Each member of the family has a different idea of what should be done and what their loved one would have wanted. That’s the point when the loved one and their family caregivers realize they should have planned ahead and talked about the care they would want in a medical crisis.

Heartbreaking scenes like this happen far too often.

The National Hospice and Palliative Care Organization encourages families to spend time talking about the care they would or would not want long before a medical emergency is at hand. This is particularly important when family caregivers are coping with a serious or life-limiting illness of a loved one.

Advanced Care Planning

Having discussions about one’s health care wishes is part of advance care planning.

Advance care planning involves making decisions about the care you would want to receive in a medical crisis that might be the result of a serious illness or an unexpected accident.  Advance care planning also involves deciding who will speak for you if you are not able to speak for yourself.

An essential part of advance care planning involves having these important conversations with your loved ones – and then completing the documents that will reflect your wishes.

Advance care planning also includes:

  • Deciding what types of treatment you would or would not want should you be diagnosed with a life-limiting illness or faced with a serious medical crisis. For some people this might include all possible medical interventions while others would prefer to make quality of life a priority.
  • Sharing your personal values and beliefs with your loved ones, caregivers and your health care professionals. Additional people to talk with might include a leader of your faith community or close friend.
  • Completing an advance directive to put into writing what types of treatment you would or would not want.
  • Designating a person as your health care power of attorney (sometimes called a health care proxy) to speak for you if you cannot speak for yourself. In some states, the advance directive form includes the health care proxy, other states make this an additional form.

Resources for Caregivers

NHPCO’s CaringInfo.org offers free state-specific advance directive forms and free information to help families talk about the care they would want. Visit caringinfo.org/planningahead.

Hospice and palliative care providers see how difficult it can be for families that have never talked about care choices and are in a crisis situation. Similarly, they see how beneficial it can be when the priorities at life’s end have been discussed and are clearly understood.

Not only is it important for each of us to clearly make our wishes known through advance care planning but it is one of the most important gifts we can give to our families and loved ones.

Read this article online at Real World Health Care.