Mission: Cure Blog

Nov 21
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Managing Chronic Pain in Pancreatitis

By Blog, Pain Management, Patient Resources, Pediatric Pancreatitis, Topics

Key points:

•   Chronic pain from pancreatitis takes a major toll on patients and their loved ones.
•   To effectively treat chronic pancreatitis pain, we need to address the symptoms as well as the impact of pain on patients’ lives. 
•   One piece of the solution is self-management, which involves education, lifestyle changes, pain coping skills, and emotional and social support.
•   Computer and smartphone technologies can be used to teach self-management to patients who lack access to interdisciplinary pain facilities.
•   There are self-management apps specifically for pancreatitis pain and clinical trials for children and adults to determine how effective they are.

Dr. Tonya Palermo - Managing Chronic Pain in Pancreatitis

Dr. Tonya Palermo – On September 26, 2019, Mission: Cure hosted a webinar on Living with Chronic Pain for pancreatitis patients. Pediatric psychologist Tonya Palermo of the University of Washington, an expert in pain medicine, discussed her research on pain management techniques.

The agonizing burdens of chronic pain

The definition of chronic pain will feel familiar to any chronic pancreatitis patient: ongoing or recurrent pain, lasting beyond the usual course of acute illness or injury or more than 3 to 6 months, and adversely affecting the individual’s well-being. In fact, this type of pain—persistent, intense, debilitating—is a defining feature of chronic pancreatitis. Mission: Cure’s Patient Experience Survey identified this pain as the primary symptom affecting patients’ day-to-day lives. 

 Chronic pain affects more than 100 million American adults, including patients suffering from chronic pancreatitis. This number is growing. The burden of chronic pain already eclipses the burden of diabetes, heart disease, and cancer combined. 

Yet chronic pain is difficult to treat and manage. This is partially because the pain system is extremely complex. Research shows that chronic pain does not simply affect the parts of the body experiencing pain. It actually changes the brain. 

I’m a pain specialist, so I see every day what this means for my patients. Chronic pain is not just about aching bodies. It affects patients’ emotions, activities, and relationships—virtually every aspect of their daily lives. Half of patients with chronic pain suffer from anxiety or depression. Chronic pain prevents patients from spending time with their kids, enjoying the company of friends, fulfilling their responsibilities at work. Families suffer too. When children are in chronic pain, their parents are often consumed by worry, anxiety, or fear.

Today we understand that three factors influence the way we perceive pain: biological (such as our sex or whether we’ve been through puberty), psychological (such as our beliefs, moods, or styles of coping), and social (such as our cultural backgrounds or income levels). What does this mean? In responding to chronic pain, we must take a comprehensive approach that addresses all of these components.

How should doctors tackle chronic pain? 

Here’s how I believe we should address chronic pain, given what we now understand. The first step is assessment. It begins with evaluating the location of the pain, how severe it is, how long it lasts—in other words, asking detailed questions about the nature of the pain itself. 

New techniques allow us to measure how the body responds to pain, which can help us decide how to manage it. Next is assessing the impacts of pain. This is new, and essential, given all we’ve learned about the social and psychological effects of pain. Any patient with chronic pain should be screened for depression and anxiety because they occur so frequently. 

The next step should be a treatment program that draws on many disciplines. An ideal program would include 

  • education about chronic pain, 
  • medication, 
  • physical therapy, 
  • alternative therapies, 
  • academic support for children, and
  • self-management techniques.

Self-management allows patients to minimize the impact of pain on their health and daily life.

Managing your own pain 

I want to focus on that last item: self-management. Self-management refers to a comprehensive set of psychological techniques that empowers patients to tackle their own pain. Self-management programs educate patients about chronic pain and teach strategies for managing pain symptoms, such as relaxation techniques.  These programs help patients think about pain in a different way, which reduces fear and panic about the pain. Patients say they feel less likely to go to the hospital for pain when they can think more rationally about it. Self-management programs also help patients resume activities they value—for instance, helping them to re-engage in physical activities. Sometimes they target a particular issue, such as sleep. Self-management is a comprehensive approach, considering patients’ lifestyles and emotional and social support needs, reminding patients they are not alone and that there are a lot of other people struggling with the same thing.

There is a strong research base—around 100 studies—on the effects of psychological therapies on chronic pain in adults, finding moderate improvements in patients’ disability, mood, and catastrophic thinking about their pain. My colleagues and I reviewed 43 randomized control trials of adolescents with chronic pain and found small to moderate benefits in reducing pain intensity, pain frequency, disability, and anxiety, showing that these therapies are helpful for people of all ages.

A limitation of the research base is its lack of published studies on pain interventions specifically for chronic pancreatitis. But there’s good news: two current studies are addressing chronic pancreatitis pain management.

Pain management on your computer or mobile phone

There is a severe shortage of interdisciplinary pain facilities, especially for children, with only about one facility per state. Waiting lists are long. Despite the urgent need, only about 5 percent of kids with chronic pain, and very few adults, get the psychological treatment we know could help their pain. 

Fortunately, technology offers a way for people to get psychological care without going to a psychologist by bringing pain care directly to patients. For 15 years, I’ve been working on technology to teach self-management techniques, recently focusing on chronic pancreatitis. I’ve helped launch two trials of web-based methods, one each for children and adults.

Pain management on your computer or mobile phone

There is a severe shortage of interdisciplinary pain facilities, especially for children, with only about one facility per state. Waiting lists are long. Despite the urgent need, only about 5 percent of kids with chronic pain, and very few adults, get the psychological treatment we know could help their pain. 

Fortunately, technology offers a way for people to get psychological care without going to a psychologist by bringing pain care directly to patients. For 15 years, I’ve been working on technology to teach self-management techniques, recently focusing on chronic pancreatitis. I’ve helped launch two trials of web-based methods, one each for children and adults.

The second program is for adults 18 and older with chronic pancreatitis. It has been adapted for pancreatitis patients from an Australian program, the Pain Course. The Pancreatic Pain Course has five lessons that teach self-management, as well as vignettes of real patients. The Mayo Clinic and Seattle Children’s Research Institute are evaluating it; their trial is also open for enrollment. (See box.)

Current trials of self-management technologies for pain in chronic pancreatitis

WEB-MAP
855-932-6272  

Enrollment criteria: 

  • Children between 10 to 17 years old
  • Suffering from chronic pancreatitis
  • Parent and child have access to the Internet

Pancreatic Pain Course
206-884-6312

Enrollment criteria: 

  • Older than 18 years old
  • Diagnosed with chronic pancreatitis and experiencing associated pain
  • Have access to a web-enabled device

***

Mission: Cure thanks Dr. Palermo for sharing her insights on managing chronic pain. We’re heartened by the growing interest in developing better treatments for pancreatitis pain and are working hard to persuade researchers and funders to devote resources to pancreatitis patients. Dr. Palermo can be reached at palermolab@seattlechildrens.org.

To watch Dr. Palermo’s webinar

CLICK HERE
Nov 06
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Scary Medical Procedures Can Cause PTSD in Kids with Pancreatitis

By Blog, Pediatric Pancreatitis

Key takeaways:
•   Medical procedures can be traumatic for children, and this trauma can cause “medical PTSD”– a condition called pediatric medical traumatic stress, or PMTS
•   PMTS is being studied in people with chronic pancreatitis and other chronic illnesses
•   If children suffer from PMTS, parents can help by finding psychologists experienced in chronic illness, keeping their doctors and social workers informed, and seeking care for themselves

Addison Cuneo - Managing Chronic Pain in Pancreatitis

Addison Cuneo, MD, Clinical Fellow Pediatric Gastroenterology, Hepatology, and Nutrition University of California, San Francisco

I see you. I see the struggle of chronic illness, I see the deeply intertwined web of psychological stress and reactions of the body, and I see the impact of the “care” provided by the medical system.

As a fellow in pediatric gastroenterology, I have spent the last few years at the bedsides of my patients, many of whom are living with the ebbs and flows of chronic pancreatitis. I have witnessed a medical system that repeatedly imposes stressful and potentially traumatic practices on kids and their families. I became interested in understanding the trauma caused by medical care and the role this trauma plays in chronic illness.

Researchers are just starting to recognize that medical care can actually be traumatic for patients, especially children. Here’s what we’ve learned so far.

When Treatment Causes Trauma: Medical PTSD 

When Treatment Causes Trauma Medical PTSDBeing stuck with needles repeatedly. Lying in pain in a hospital bed, connected to machines by tubes. These and similar experiences can be understandably scary for children, or even adults. 

I treated a three-year-old chronic pancreatitis patient who would lie to her parents about her pain to avoid going to the hospital. Another patient, seven years old, tried to flee the operating room, screaming “I know what you are going to do to me!” It took us 40 minutes to convince him to go under anesthesia. These children, young as they were, already believed that the hospital was not a safe space. 

What makes medical experiences traumatic, rather than merely scary or unpleasant? Experiences become traumatic when they cause lasting symptoms that impair patients’ ability to carry out normal activities. There are four aspects of this trauma: arousal (for instance, having trouble sleeping or being easily startled), intrusion (flashbacks, memories of the event coming up when you don’t want them to), avoidance (for instance, avoiding situations that trigger memories of the event), and negative mood (such as having a negative perspective about yourself). We don’t know what makes a particular incident more traumatic than others—it’s something we are researching. 

When children are traumatized by medical events, they experience a mix of physical and psychological impacts that are collectively known as pediatric medical traumatic stress, or PMTS for short. There is now a technical definition for this condition: “a set of psychological and physiological responses of children and their families to pain, injury, serious illness, medical procedures, and invasive or frightening treatment experiences.” You may be familiar with a similar-sounding condition, PTSD—post-traumatic stress disorder—and its terrible effects on soldiers and others who have experienced severe stress. PMTS has similar impacts on children and their ability to go about their daily lives. 

If you’re the parent of a child with pancreatitis, you probably recognize this phenomenon, even if the name is new. Has your child tried to avoid medical procedures? Has she become wary of doctors? Has he been withdrawn for more than a short period—maybe not engaging at school, or not playing with friends? These are common symptoms of medical trauma. Many patients with chronic pancreatitis show these and other symptoms of PMTS. 

PMTS is best understood in children with cancer or injuries, or who have been admitted to the intensive care unit. But it is increasingly being studied in patients with chronic illnesses, including chronic pancreatitis. For more information click here.

Chronic Illness Means Repeated Trauma

Traditionally, PMTS has referred to the effects of a single event—a diagnosis, for instance, or a painful procedure. But this model does not fit patients with chronic illnesses, especially chronic pancreatitis, because they are repeatedly exposed to traumatic events.  There isn’t just one operation or one period of illness. There is a lifetime of doctors, medicines, surgeries, hospitalizations, secondary illnesses, and complications, each of which means recurrent interactions with the healthcare system. 

Researchers believe that repeated childhood traumas put the body’s alert systems into chronic overdrive, creating a phenomenon called toxic stress. Toxic stress causes measurable changes to the body, altering the way the body and brain develop, right down to the structure of DNA. For more information on toxic stress click here.

Repeated traumatic stress can cause measurable changes to the body

What Can We Do?

The study of this phenomenon is in its infancy. But in the coming years, we hope to better understand 

  • how common Pediatric Medical Traumatic Stress (PMTS) is in patients with chronic pancreatitis 
  • what puts patients at risk for PMTS
  • how some patients endure many traumatic events without developing PMTS 
  • the impact of PMTS on the disease’s progression. 

Along with other scientists, I am studying ways to minimize medical trauma to children undergoing treatment, screen patients for risk factors, and ease symptoms. 

The National Child Traumatic Stress Network has already taken the first steps, putting together resources for parents and providers to address medical traumatic stress. Check them out here.

Although we’re still learning a lot about PMTS, we do know of steps that parents can take to help their kids avoid medical trauma. For instance, it’s very important to maintain schedules and routines, at home and in the hospital. Even something as simple as brushing teeth twice a day can send the message that regular life is continuing. Be sure to communicate early in the medical process with your child’s doctor and social work team. And never trick or lie to your child about a medical procedure or hospital stay. I’ve seen well-meaning parents do this, but it never helps, and often causes damage. Your child’s medical caregivers can offer advice on how to talk to your child about upcoming medical care.

If your child is suffering from PMTS, keep up with those all-important routines. Seek psychological help but be aware that since PMTS is related to medical care, you need to keep your child’s doctors and social work team involved. Find a therapist with experience with chronic illness. If you are unsure how to locate one, check with your medical or social work team for advice. And don’t forget about yourself. If you’re finding it hard to cope with your child’s illness, get help. Helping yourself also helps your child—the effects trickle down.

Tips for preventing medical trauma to your child 

  • Maintain schedules and routines
  • Communicate early and often with your child’s medical caregivers 
  • Be honest with your child about upcoming medical procedures or visits

Tips for helping your child cope with medical trauma 

  • Maintain schedules and routines
  • Seek psychological care for your child from a therapist experienced in chronic illness 
  • Keep doctors and social workers informed about your child’s psychological care
  • Get psychological care for yourself

I see you. But today I also see a light at the end of the tunnel. I see a greater understanding of the trauma caused by treating chronic pancreatitis and a new determination to find solutions. I see hope for reducing your trauma as we treat your chronic pancreatitis.

View Mission: Cure's webinar on Pediatric Pancreatitis
Mar 25
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EPI and Pancreatic Enzymes: Expert Doctor Answers Patient Questions

By Blog, Exocrine Pancreatic Insufficiency, Patient Resources
Photo of Dr. Steven Freedman of Beth Israel Deaconess Medical Center and Harvard Medical School

Dr. Steven Freedman of Beth Israel Deaconess Medical Center and Harvard Medical School

Dr. Steven Freedman, MD, Ph.D., a worldwide expert on pancreatic disease and cystic fibrosis, presented on Mission: Cure’s Pancreatitis Patient Webinar on Exocrine Pancreatic Insufficiency (EPI) and Pancreatic Enzyme Replacement Therapy (PERT). EPI is one of the symptoms of pancreatitis.

Pancreatic enzymes are a confusing but critically important part of chronic pancreatitis treatment. If you missed the webinar, you can watch it here:  We had so many questions during the webinar that we could not get to them all. Here, Dr. Freedman answers patients’ questions about EPI and pancreatic enzymes.

How do I take pancreatic enzymes for EPI? How many enzyme pills should I take?

Q. At what part of the meal or snack should I take my enzymes?

Dr. Freedman: The goal is to mimic the actions of a healthy pancreas and a healthy pancreas will release more enzymes with fat. Therefore, a person should consider how long it will take to eat a meal and what they are eating and take the appropriate enzymes. If the meal is taking longer than expected, need to take more enzymes to match enzymes with food.

Q. A question about pancreatic enzyme dosing: For an adult the dosing is 500u/kg/meal and 250u/kg/meal. Is dosing based on size of meal or amount of fat? Are these just ballpark doses?

Dr. Freedman: The FDA approval is based on body weight. However, the pancreas does not secrete based on a person’s weight but on the food that is ingested. A typical dose based on severity of EPI (may vary by patient)

  • Mild: 1-3 capsules (24,000)/meal and 1/snack
  • Moderate: 2-5 capsules/meal and 2/snack
  • Severe: 5-7 or up to 9 capsules/meal and 3-5/snack

A super-fatty meal might require 9-12 capsules. There is no magic formula and each person may be different. The amount of fat in a meal or snack affects the amount of enzyme needed.

Q. Does drinking a glass or so of water when eating a meal cause the enzymes to move through the stomach faster (wash the enzymes away before they can start working)?

Dr. Freedman: Actually, some fluid with enzymes is helpful as enzymes need some fluid to dissolve well. For example, an 8 oz glass of water with enzymes can be helpful.

  1. I make a protein drink with milk and 10,000 Creon and this makes me constipated. Why?

Dr. Freedman: If you are constipated after certain foods or drinks, it is usually due to your normal digestive state (for example, dairy causes constipation in some people). This is usually not due to the enzymes, as pancreatic enzymes do not cause constipation.

Q. Do the enzymes really expire after a few months or is that just a ploy by the pharmacy to get us to buy enzymes more often?

Dr. Freedman: Enzymes do have an expiration date since the enzymes need to be active. Usually, they are ok for a year.

Q. Can you break Creon apart to take throughout meal, or does it reduce effectiveness?

MC:  Creon capsules should not be crushed or broken apart as that will affect how they are digested and absorbed and interfere with the action on food.

Q. Do you need to take Creon with certain drinks like hot chocolate?

MC: Yes, if the hot chocolate is made with regular milk and chocolate which has fat. Enzymes are probably not needed if it is the “low fat, low sugar” kind of hot chocolate made with water.

Q. What about over-the-counter pancreatic enzymes?

Dr. Freedman: Over the counter pancreatic enzymes or digestive aids are unregulated and most are not active whatsoever. I have found none that are effective and believe these are a waste of money.

Q. Is there a vegan (non-animal based) pancreatic enzyme that you recommend?

Dr. Freedman: No. All enzymes today are from pig pancreas. There is currently research and development going on to create a non-pig formula.

EPI (exocrine pancreatic insufficiency) symptoms and causes

Q. Why did it take so long for my physician to finally diagnosis me with EPI?

Dr. Freedman: There are few people with expertise with EPI and PERT outside of cystic fibrosis as most other doctors have not had experience or training in this area. Dr. Freedman has published extensively to provide more information for clinicians and others on this subject. Many doctors don’t consider unless the patient presents with symptoms but often malabsorption has been going on for quite some time prior to obvious symptoms. Doctors should test and treat when there is any question of EPI such as low counts in the fat-soluble vitamins.

Q. What are some causes for EPI in a child without cystic fibrosis?

Dr. Freedman: There are a few other causes including chronic pancreatitis, celiac disease, a rare genetic disorder called Shwachman-Diamond Syndrome and occasionally, idiopathic EPI that, even though there is no known cause, is treated the same with enzymes.

Q. With hereditary chronic pancreatitis for 22 years, I have all of the EPI symptoms with a chronic low lipase levels of below 10 but my fecal elastase was only 180. How could that be?

Dr. Freedman: The pancreas does have plenty of reserve and is not until >90% of the pancreas is destroyed, that EPI will develop clinically.

EPI, pancreatic enzymes and diabetes

Q. What about patients with diabetes? Does Creon/PERT affect insulin for a diabetic?

Dr. Freedman: It is no accident that the endocrine and exocrine pancreas cross talk and that a person with diabetes can affect the exocrine function as insulin is needed to keep the acinar cells healthy to release enzymes and EPI can affect the release of insulin. There is a big effect on a patient if they are diabetic and have EPI and do not take enough enzymes. Without sufficient enzymes, there is malabsorption and not enough nutrients, including glucose will be taken up. This affects the amount of insulin required. If the patient then starts taking PERT or more PERT, they will be getting more glucose and their insulin requirements will be higher. A person with diabetes needs to carefully monitor their blood sugar when starting to take PERT.

Pancreatic enzymes and the gallbladder

Q. I no longer have a gallbladder. How does that affect my digestion? (My pancreas has been resected and I have already been diagnosed and treated for EPI.)

Dr. Freedman: This may result in bile salt malabsorption, which affects how well fats are broken up and digested. In some patients, persistent oily diarrhea may develop from bile salt malabsorption, and is treated with a bile binding drug (cholestyramine, Welchol, etc).

Chronic pancreatitis pain treatment

Q. You said on the webinar that Viokace is the only enzyme shown to improve pain because it is uncoated. Should I ask my doctor to switch to Viokace?

Dr. Freedman: For treating exocrine pancreatic insufficiency, there is no need to change. For the treatment of pain, especially if the pain is not responding to Zenpep or Creon or another enzyme, then you could ask your physician to switch to Viokace with an acid blocker to see if it helps.

I can’t afford pancreatic enzymes

Q. My co-pay for Creon with insurance is over $400. My income is a bit too high for assistance. Any ideas on how to get it at a lower cost?

Dr. Freedman: This is an issue for some patients as enzymes are expensive. Most of the manufacturers of pancreatic enzymes have assistance programs. You should check with them. Also, check with your physician to get help with these assistance programs and/or to try to get authorization from your insurance company.

Do I need pancreatic enzyme replacement therapy, or PERT?

Q. I have been diagnosed with chronic pancreatitis. I have/had no symptoms of EPI. 1st fecal elastase was 70.  Put on Creon for EPI and to alleviate pain.  On Creon for ~ 1 month, retest of fecal elastase was >250.  7 small meals/snacks day, one 12,000 unit Creon with each.  Want to go off Creon for 2 weeks and retest fecal elastase.  Not sure I need it at all.

Dr. Freedman: Creon will not interfere with the fecal elastase test. Given a normal value of >250, it is not unreasonable to retest.

Q. What is risk of starting PERT too soon? I have low fecal elastase but my doctor said I don’t need to start PERT because I have no symptoms.

Dr. Freedman: There is no value to starting PERT prior to a diagnosis of EPI but there are no risks of taking PERT. PERT has no side effects but they will not be absorbed and no data that supports that taking PERT will slow down the progression of the disease. In some patients with frequent recurrent acute pancreatitis attacks quick release PERT may help.

Q. I have Crohn’s of the jejunum and a partial pancreatic divisum. I am low in Vitamin A and D but I don’t know about the other vitamins. Do I need to take pancreatic enzymes?

Dr. Freedman: You should have your physician check a fecal elastase test and that would determine if you need pancreatic enzyme replacement therapy.

Q. I have chronic pancreatitis and my MRI shows atrophy. Does taking enzymes help slow down the atrophy process?

Dr. Freedman: Probably not based on studies in animal models of pancreatic disease. We would like enzymes to slow down the process of atrophy but instead we need to target the underlying chronic pancreatitis to minimize inflammation and scarring to minimize the atrophy process.

TPIAT and pancreatic enzymes

Q. If I get pancreatic surgery, do I automatically need a PERT?

MC: If you have a total pancreatectomy you will need PERT as you will no longer have a pancreas to produce enzymes and will need to take PERT.

Q. I had the TPIAT (Total Pancreatectomy with Islet Auto-Transplantation) 17 months ago. I take Creon as I had prior to my pancreatectomy. I need an NJ feeding tube. Will I need to take enzymes still?

Dr. Freedman: After a pancreatectomy you will need to take enzymes as you no longer have a pancreas to provide these enzymes. There is a product called RELiZORB that provides enzymes in a cartridge designed to work with enteral feeding.

Q. What enzyme do you suggest for a young adult who has had a TPAIT and still has pain?

Dr. Freedman: This is a complicated issue since TPIAT should have relieved your pain from chronic pancreatitis. Thus, other causes of your pain should be explored.

Jan 11
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Genetic Testing for Pancreatitis: What We Know Now

By Blog, Genetics, Patient Resources, Topics
Mark Haupt

Dr. Mark Haupt, MD is the Chief Medical Officer of Ariel Precision Medicine, a company that provides digital health and genomics solutions for complex disorders, like pancreatitis. Dr. Haupt is a Pediatric Pulmonologist who has dedicated his career to helping patients with pancreatic disease through his work in academia, the pharmaceutical industry, and his current work with Ariel.

As a researcher and clinician, I’m incredibly excited by advances in our understanding of pancreatitis and their potential to help pancreatitis patients. Pancreatitis patients suffer terrible pain, along with other symptoms, and are often frustrated at the lack of effective treatments. But today, thanks to advances in genomics (the study of genes and their function), we’re on a path toward developing those treatments. Mission: Cure is expediting these new discoveries and jumpstarting progress toward treatments—and eventually cures—for pancreatitis.

The role of genetics in pancreatitis

The ‘traditional’ approach to medicine does not adequately characterize the complex nature of pancreatitis or permit the identification and development of suitable therapies. Patients are often wrongly blamed for their own suffering. As a medical community, we often focus too much, or solely, on the role of alcohol in pancreatitis, a role we now know has been tragically overstated. This bias results in pancreatitis patients being offered few treatment options and little hope.

But today, there is good reason for hope. Science is unraveling the mysteries of pancreatitis. We now understand that multiple factors in different combinations are involved in its cause and progression. We’ve made leaps in identifying those factors—especially the genetic factors. The dramatic increase in  genetic testing is a part of that advancement. More conditions are being evaluated by genetic testing, more patients are being tested, and more genes are being investigated. It is hard to overstate the importance of these advances.

Today we know that genetic variants (changes in the DNA, also known as mutations) cause or contribute to many cases of pancreatitis. Even in the cases where alcohol does play a role, genetic factors appear to predispose patients to the disease or accelerate the progression of the disease. We have identified multiple genes and variants involved and understand that some genes cause pancreatitis, while others affect how the disease progresses. Below is a list highlights some of the genes that researchers have found to cause or contribute to the progression of pancreatitis.

Pancreatic disease causing and disease modifying genesAs more people get genetic testing, we are increasing our knowledge about the specific genetic variants and other factors that cause pancreatitis and the biological mechanisms that underlie the disease. This means that we will soon be able to predict individual patients’ disease progression and outcomes. We will be able to better tailor treatments to each patient’s needs, linking the right treatment(s) to the right people. Over the long term, we will finally be able to move beyond treating symptoms; we hope to intervene earlier and slow or prevent the progression of pancreatitis.

Practical considerations of genetic testing for pancreatitis

If you’re a pancreatitis patient, you may have questions about genetic testing.

Who should consider genetic testing?

Genetics and Pancreatic DiseasesCurrent guidelines suggest testing for certain subgroups of pancreatic patients, such as unexplained recurrent acute or chronic pancreatitis, a family history of pancreatitis, or an early onset of pancreatitis. The bottom line is, in any case in which the cause is unclear, even if there is a history of excessive alcohol consumption, genetic testing can be useful. We also know that genetic causes of pancreatitis are quite common in children.

The question of insurance coverage is also raised. Coverage depends on the plan. But, recognizing the importance of this information, insurance companies are increasingly covering testing. If you have specific questions about coverage, talk with the genetic testing company or your insurance provider. In many cases, the testing company has resources to help navigate this process.

What kind of testing should I get?

There is a wide variation in the pancreatitis testing panels offered by different companies.  At Ariel, we evaluate 13 different genes related to pancreatitis, and also look at genes related to fat and cholesterol metabolism if indicated. We also evaluate genes related to how your body processes medications, called pharmacogenomics. Some other labs evaluate 4 or 5 genes, or only look for very specific variants, and may or may not include the cholesterol genes and the pharmacogenomics.  That’s why it’s crucial to talk to your provider about your specific situation. Your doctor, and sometimes a genetic counselor, can help decide what to test and what company to use. They can explain the risks and benefits of testing and what types of results may be returned. Understanding all of this before testing is important. If a genetic counselor is not available at your hospital or clinic, some genetic testing companies provide access to genetic counseling services. There are also many telemedicine services that provide genetic counseling, before selecting a testing company and/or after test results are available. These services are often covered by insurance. You can find more information about genetic counselors and find a genetic counselor

What will testing tell me? How will it help?

Genetic testing will identify if you have any changes in your genes that might cause pancreatitis or result in faster disease progression, giving you and your practitioner vital information: the type of disease you have, whether you have disease-modifying genes, and how your disease might progress without treatment. This information can also help determine whether any of your family members that may also be at risk. Lastly, genetic testing may help identify other tests that may be recommended such as screening for diabetes, cystic fibrosis or pancreatic cancer. In the near future, we also hope that genetic testing will help identify what medications might help you based on what genetic variant you have, similar to what happens in cystic fibrosis.

Looking ahead

We’re on the cusp of even more progress. Researchers are using this new genetic knowledge to identify possible treatments to slow or even stop the progression of pancreatitis. In the meantime, it’s important to educate clinicians about these new developments. Many doctors remain unaware of all but the most common genetic causes of pancreatitis and of the availability and usefulness of genetic testing. We need your help to get the message out. Patients can drive progress in treating pancreatitis by educating their providers.

Our goal is to use our ever-increasing knowledge to deliver precision medicine: personalized treatment specific to each patient’s form of pancreatitis, as revealed by genetic testing.

We look forward to continuing our partnership with Mission: Cure to make this new vision a reality and to finally bring effective therapies to pancreatitis patients.

Sep 27
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Dr. Asjbørn Mohr Drewes, MD, PhD

New Guidelines for Managing the Pain of Chronic Pancreatitis

By Blog, Pain Management, Patient Resources, Topics
Dr. Asjbørn Mohr Drewes, MD, PhD

Dr. Asbjørn Mohr Drewes, MD, PhD, is a widely-recognized expert in gastroenterology and pain, especially in diseases of the pancreas and oesophagus. Acting as both a clinician and researcher, he has authored 507 peer-reviewed articles, book chapters, and reviews, and is a frequent speaker at international conferences. He is currently the Director of Mech-Sense and Center for Pancreatic Diseases at the Aalborg University Hospital in Aalborg, Denmark.

Chronic pancreatitis (CP) is a poorly understood disease, to the immense frustration of patients, clinicians, and researchers. There is good news: consensus guidelines on chronic pancreatitis pain have been developed by an international team of experts. The task now is to make clinicians and patients aware of them.

The challenge of managing chronic pancreatitis pain

Abdominal pain is the most prevalent symptom of chronic pancreatitis, yet chronic pain is notoriously difficult to assess and treat. Doctors must often rely on patients’ descriptions of their pain, but they tend to distrust these reports. Doctors, and sometimes family and community members, may dismiss patients’ complaints of chronic pain as exaggerated, or view the patients as overly sensitive.

When chronic pain comes from pancreatitis, additional factors come into play. Very often, the cause of the pain isn’t clear, making it hard for clinicians to address it. Sometimes, the reasons for pain are found outside of the pancreas (such as a peptic ulcer), which can be easier to treat once identified. Adding to identification and treatment complexity is that some patients have multiple sources of pain that can flare up at the same time or at different times. Read More

Jul 26
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Chronic and recurrent Acute Pancreatitis Pationt Prespectives

Preliminary Results of Patient Survey and Continuing Project

By Blog

As many of you may know, Mission: Cure recently launched its first patient survey to gain real-world patient perspectives on living with the disease. Although the survey is ongoing, and we ask that patients who have not completed the survey take a moment to do so, we are also excited to share some preliminary insights that we have gathered from the first 145 responses.  We are excited to present a white paper report on the results of these first responses that was shared with researchers, clinicians, and FDA authorities at the PancreasFest conference in Pittsburgh, PA earlier this week. The report is in tune with an FDA draft guidance issued just last month on “Patient-Focused Drug Development” and came at a pivotal time in a transforming US healthcare system in which patients are beginning to take the driver’s seat in directing care.

The survey, phrased as an open dialogue with the FDA, asks patients to shed light on their symptoms and current treatment plan and to describe the aspects of the disease they find most difficult to live with. Initial analysis reveals four recurrent themes in patient experiences: a huge lack of understanding of pancreatitis from medical professionals, a lack of available treatments, the need for continuing research, and burdensome symptoms that place a large toll on daily life. We invite everyone to read through and download the report found by following this link to glean more detailed insights into our results.

Putting patients at the forefront of decision making has the potential to unify researchers, drug developers, and government officials with a streamlined goal of improving patient outcomes. In the words of co-director Linda Martin, “This survey is just the beginning. As we continue to connect with and understand the patient perspective at a deeper level, we will be able to guide the industry to make meaningful choices that will have a direct impact on patients.”

We would like to thank Annie Kennedy and Ryan Fischer from Parent Project Muscular Dystrophy for kindly providing advice and suggestions for our patient survey and helping make this project possible.

For any further questions regarding our report or our patient survey project as a whole, please reach out to info@mission-cure.org.

An official press release regarding our patient survey can be found here.

Jul 13
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Mission: Cure - Contribute by completing survey

Introducing Mission: Cure’s First Patient Survey

By Blog

Announcement of Mission: Cure's patient surveyHere at Mission: Cure, we strive to bring the patients’ voices to the forefront of our work. Our mission is to cure chronic and recurrent acute pancreatitis by using an innovative financing model to incentivize research and development. We are asking for you, patients and caregivers, to take a couple of minutes to fill out our patient survey. We believe that the needs and perspectives of you – someone who lives with pancreatitis – should be placed at the center of finding cures. We want researchers to know what improvements you most want to see so that they can identify the most appropriate treatment targets. We want drug developers to know what has not yet been addressed so they can prioritize future decision making. We want the Food and Drug Administration (FDA) to know how you evaluate risks and benefits so drug regulation and approval can be aligned with your preferences. We want to bring your input into every aspect of the drug development and evaluation process, so drugs that will address your needs can be brought to you faster. Our patient survey aims to provide us with a better understanding of the challenges that you want us to focus on and to lay the groundwork for us to better connect and mobilize the patient community.

Mission: Cure is starting this effort with our first patient survey, today. This short survey should only take about 10 minutes to complete and will provide valuable primary information for our future efforts to collect comprehensive patient experience data. We would really appreciate it if you could take a few moments to complete the survey, and share it with others who can also contribute.

Mission: Cure’s first pancreatitis patient survey is here: https://goo.gl/forms/ZSqdXdBjGmlrUwcL2

Jun 05
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Stephen Pandol, MD, is Director of Basic and Translational Research at Cedars-Sinai Medical Center

Pancreatitis and Alcohol: What’s the Real Connection?

By Alcohol & Pancreatitis, Blog, Genetics, Patient Resources, Topics

I’ve been researching and treating chronic pancreatitis for decades, so I know firsthand what a complicated disease it is and how many unknowns remain. Answers are finally beginning to emerge, but the research is still very preliminary, underscoring how much more we need to learn. It has become increasingly clear that chronic pancreatitis (CP) is caused by multiple factors. Those factors vary from patient to patient and in how they interact with each other.

Photo of Dr. Stephen Pandol, author of this post on alcohol and pancreatitis.

Stephen Pandol, MD, is Director of Basic and Translational Research at Cedars-Sinai Medical Center and Professor of Medicine, University of California Los Angeles. His career has been devoted to understanding the mechanisms of pancreatic diseases, both inflammatory and malignant.

The focus on alcohol and pancreatitis prevents patients from getting the best care

As a scientist, I’m worried by the continued misunderstanding of the etiology of chronic pancreatitis. As a clinician, I’m troubled by the often-tragic effects this has on CP sufferers.

The focus on drinking and alcoholism stigmatizes pancreatitis patients and prevents them from getting the best care. Patients are counseled to “just quit drinking,” advice that is as inappropriate as it is insensitive. Parents of pediatric patients are accused of giving their children alcohol. Conversely, light drinkers or nondrinkers receive incorrect or delayed diagnoses. The beliefs about alcohol’s role have also gotten in the way of developing effective treatments.

If you’re a CP patient, you probably know all this. I’ve seen it with my own patients over the years: the suffering of the disease is compounded by frustration at the lack of treatment options. It’s a terrible mix that leaves many patients debilitated, discouraged, and depressed.

Unfortunately, most people—including most doctors—cling to an outdated, one-dimensional view: that CP is caused by alcohol. This belief is constantly reinforced by the media. We’ve seen this recently in coverage of the suicide of Swedish DJ Avicii, which often links his pancreatitis to heavy drinking.

New research is giving us a fuller picture of chronic pancreatitis beyond alcohol use

Fortunately, a small group of determined researchers has begun to untangle the causes of CP and put the role of alcohol in better context. Advances in genetics have played a huge role. Precision medicine—tailored to particular combinations of genetic, environmental, and lifestyle conditions—is an exploding area of research, and chronic pancreatitis is a natural target. Because CP is so complex, we needed these developments to get a better handle on it.

New science has also shifted our approach. For a long time, research focused on the fully diseased pancreas in long-term chronic pancreatitis. But now we’re looking at the process of reaching that stage of disease. This not only helps us better understand CP’s progression; it will also help us find therapies for earlier stages of the disease.

Here’s what the science is now telling us about alcohol and CP:

In general, drinking must be very heavy to show an association with chronic pancreatitis: Only very heavy drinking—four or five drinks a day over a prolonged period (five years)—appears to be associated with the onset of CP. Even among people who drink that amount, only about 3 percent develop pancreatitis.

Genetic factors appear to be linked to alcohol-induced chronic pancreatitis: In that small group of heavy drinkers who develop CP, genetic alterations appear to be involved. The mechanisms of alcohol-induced pancreatitis are complex and involve disorders of both the acinar cell and ductal cells of the exocrine pancreas.

Moderate drinking appears to be associated with lower rates of chronic pancreatitis:  Moderate drinking is defined for women as less than one alcoholic drink per day and for men, less than two alcoholic drinks per day.  (But there is a crucial caveat: once a person has CP, any amount of alcohol may contribute to progression of the disease.)

Tobacco use is an even greater risk factor than alcohol use: Evidence increasingly points to tobacco as a risk factor; it is also associated with progression of the disease. Tobacco appears to inhibit a protective pathway in acinar cells.

There is still more research around drinking and pancreatitis to be done

These are important findings, but the new wave of research is still in its early stages. And the group of scientists exploring these issues remains relatively small.

We need more attention to this disease, and more collaboration. We need to collect and analyze more information on alcohol, genetics, and other factors that influence the symptoms and progression of CP.

Some needed steps include

  1. Determining the potential role of genetics in the formation of the disease. Patients should encourage their doctors to obtain genetic testing as treatments are being developed.
  2. Analyzing a wide range of information (including genetics) from pancreatitis patients to understand the many factors involved in this complex disease, which will lead us to treatments that might not otherwise have been considered.
  3. Conducting pilot clinical trials based on already approved drugs that attack the disease mechanisms that drive or contribute to chronic pancreatitis.
  4. Creating, developing, and testing the next generation of therapeutics directed to specific molecular pathways.

I’m working with researchers on all of these fronts. We are fortunate to have Mission: Cure behind us. Its innovative financing model will jumpstart these early advances and move us more quickly toward the goal we all share: finally delivering effective treatments and better outcomes to chronic pancreatitis patients. 

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