Patients as Partners: Member Laura on launching a PF support group

Posted June 24th, 2016 by

Laura (standing on left) at the June meeting of the New Britain PF Support Group

Over the past few months, the Team of Advisors has been sharing how they use the Partnership Principles in their personal health journeys. Laura, who’s living with IPF, recently sat down with us to talk about the New Britain PF Support Group she launched in Connecticut, and how important it is to have a community of people who know what you’re going through. Check out the Q&A below to see how she helps patients, caregivers, and their families understand that they’re not alone.

Tell us a little about the New Britain PF Support Group — who’s involved and what’s the goal?

The New Britain PF Support Group had the first meeting September 2015. The meeting is for the patient and caregiver, plus family and friends who may be interested in understanding what their loved one is going through.

The goal is to provide information on PF/IPF. Knowledge can empower the patient and caregiver to work with their doctors and professional team. Most importantly, the support group lets people know they are not alone — we are all in this together and we understand.

How did you come up with the idea of creating the group?

There was only one support group in Connecticut and it was quarterly in New Haven, about an hour away from me. I would go and get such wonderful information and talk to some really awesome people, both professionals and patients. Most of the patients were from the southern part of CT, and I felt that people in the northern part of the state would benefit from a face-to-face support group meeting. I knew from going to the meetings at Yale New Haven Hospital that I always left there feeling more empowered and emotionally stronger. I wanted other PF/IPF patients to feel the same.

Since September 2015, another group has been started further west. In attending those meetings I’ve met new patients. It’s exciting to see that we are touching more and more PF/IPF patients who didn’t have face-to-face support with others who shared the same issue.

What’s the most beneficial aspect of partnering with others who know what you’re going through?

We have quarterly meetings and while the first part is educational (information about what is going on in treatments for IPF/PF), the majority of the meeting is support. If you sat in the corner and watched, you’d notice that the patients and caregivers are like sponges. They want to get information from others who’ve “been there” and they want to give others their knowledge.

At the second meeting my daughter said “Mom, they just want to talk,” and she’s so right. Meetings are supposed to be two hours, but not one has ended on time because no one wants to leave. That speaks volumes.

At our first meeting we had 23 people, and each meeting averages about that many. We have new patients who look totally devastated when they walk in and relieved when they leave. It humbles me to see how everyone touches a life in there.

How is this type of peer partnering different from your other health-related relationships?

For me, this disease has become a full-time job. I’m in a clinical trial, I am in a transplant program at one hospital and being evaluated at another at the moment. That’s in addition to going to the gym to stay strong or to pulmonary rehab maintenance. I have to make sure that all my tests are updated so life becomes one big doctor’s appointment. The doctors, coordinators, nurses, technicians, etc. are all very nice and helpful, but there is nothing like being able to vent your frustration or talk about the excitement of “passing” a test to another patient. Someone who knows exactly what you are going through. It’s priceless, really.

What have been some of the challenges of starting a support group?

I’ve been lucky, the only challenge I’ve had is getting the facility to let us start a meeting. Once that was cleared it’s been a breeze. The Hospital for Special Care has been so very good to me. The Pulmonary staff is so caring and awesome to deal with. I became a Support Group Leader with the Pulmonary Fibrosis Foundation (PFF). They provide grants to start a group and educational booklets. Most importantly they provide support to the support group leaders. I’m told by other leaders that it’s a challenge getting presenters. I’m sure I will have that issue eventually but being a new group that hasn’t happened yet.

What do you enjoy most about it?

I truly enjoy seeing the patients and caregivers. The more patients and caregivers we have, the more family and friends we can educate. The more I get out of my own head and help others, the more emotionally strong and empowered I feel. Every time I see the number of people and new people who show up or even contact me I get emotional. Makes me realize how not alone I am.

Do you have any advice for others looking to start similar groups? 

Yes: Find a place, contact Pulmonary Fibrosis Foundation, and do it. There is definitely a need.

 

 

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Food for thought: Which foods trigger headaches and migraines?

Posted June 23rd, 2016 by

Last week, we shared some study results for National Migraine and Headache Awareness Month. Today, we’re digging deeper into which foods might trigger – or help – chronic headaches. We asked the community for their diet dos and don’ts, and here’s what members have said so far…

 

“I have found too much sugar can trigger a migraine. But then at the same time, in the past when I have had a migraine, If I drank a Mountain Dew (regular) and ate salty potato chips it would help alleviate it.  I believe it was the salt and caffeine that helped.” 

— PatientsLikeMe member living with chronic kidney disease

 

“I have noticed an incredible difference dropping sugar from my diet along with dairy. Am now using Stevia and there are many alternatives to milk products.”

 —PatientsLikeMe member living with rheumatoid arthritis

 

“I have suffered migraines for more than 35 years… At one point, I was having migraines that were non-stop for three to five months at a time. One of my biggest triggers was fish. The only fish that I can eat anymore is salmon and tuna. I can eat shrimp in small amounts but absolutely nothing else.”

— PatientsLikeMe member living with fibromyalgia

 

Which foods set off your headaches or migraines? Head over to the forum and share your experiences with the community.

 

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Migraine & Headache Awareness Month: New insights from a recent study

Posted June 16th, 2016 by

It’s National Migraine and Headache Awareness Month, so let’s help spread that awareness by sharing the results of a recent survey that 300 members from the migraine community on PatientsLikeMe took.

For this study, we defined chronic migraine as having had 15 or more headaches in the past month. Here’s what members helped uncover:

High level takeaways:

Some of these high level results might seem obvious, but we first wanted to set a baseline for what the community was experiencing.

  • The more they experience migraines, the more types of symptoms they report and the worse those symptoms are.
  • Also the more they experience migraines, the worse their overall quality of life becomes for things like their ability to be active and their emotional experiences.  
  • Those who experience chronic migraines more often report also living with anxiety disorders.

Symptoms takeaways:

Not surprisingly, you’d expect that if a person is living with migraines, some of the symptoms they’d report would be headaches, nausea and light sensitivity. But what they also shared is that their experiences go beyond these typical symptoms to include:

  • Pain: back pain, muscle and joint pain, muscle spasms
  • Mental: brain fog, problems concentrating, dizziness
  • Fatigue: sleepiness, insomnia, fatigue, exhaustion

Treatment takeaways:

We also wanted to learn more about the treatment types this community is taking to treat migraines and how burdensome they are. Here’s what they shared:

  • Nonsteroidal anti-inflammatory drugs (NSAIDS) (e.g. Ibuprofen, Naproxen) and Antimigraine (e.g. sumatriptan, zolmitriptan) are the most reported types of treatments.
  • Most patients report taking their treatment as prescribed with few issues.

 

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Patients as Partners: Allison shares her insight on teaming up with organizations

Posted June 15th, 2016 by

Allison (center) receiving the 2015 “In Our Own Voice” Presenter of the Year award from the Dallas Police Department

This year’s Team of Advisors has been sharing how they use the Partnership Principles in their health journeys. Today, we hear from Allison, who’s living with bipolar II. Allison is a volunteer with the National Alliance on Mental Illness (NAMI) in Dallas and also runs support groups for the Depression Bipolar Support Alliance (DBSA). See what she has to say about the two principles that she relies on most in her relationships with these organizations, and what she’s learned along the way: “I realized I could use MY voice to help others.”

Can you tell us a little about the different organizations you’ve partnered with?

I have been working as a volunteer with NAMI Dallas. NAMI is the National Alliance on Mental Illness. I was on the NAMI Dallas board of directors. NAMI has affiliates in every state. They have programs for family members and for people living with a mental illness. I am a volunteer scenario trainer for Dallas Police Department. The scenario training is part of a 40-hour class that the officers take, focused on Crisis Intervention Training. I am certified to run support groups for DBSA (Depression Bipolar Support Alliance).

How did you initially get involved?

After being diagnosed with bipolar, I wanted to find other people who were living with similar conditions. I started attending support groups and taking classes at my local NAMI and DBSA organizations as a way to find support and learn about my mental illness. After attending many NAMI meetings I was asked if I would go to training to become a support group leader. Shortly after starting new support groups I was sent to St. Louis for training to become a teacher for their program Peer to Peer.

I also took a class that NAMI offers called, “In Our Own Voice.” This class helped me put my life story together so that I can organize my thoughts to share my story with others. After a few years of teaching and leading groups I was asked to tell my story to a group of firemen. The firemen and women were new recruits and I was there to give them some insight about mental illness and ways to be helpful when faced with mental illness calls. That talk was the beginning of something new for me. I realized I could use MY voice to help others.

I have been volunteering with the Dallas Police Department each month by doing scenario training. We create scenarios the law enforcement officers encounter on a regular basis. Our goal is to teach them new ways to work with people who show signs of mental illness. At the end of the week I share my life story with class of officers. It is an amazing experience when I have the chance to work with them and then share my story because they have no idea, all week, that I am a person who lives with mental illness. I was awarded the 2015 In Our Own Voice presenter for the Dallas Police Department, and that was a very memorable moment for me.

What are the dos and don’ts you’ve learned about how to effectively share your story so people will listen?

I have learned to share my story only when people are interested, if I am asked, or if I feel I will be helping someone by sharing my experiences. The most helpful thing I did to get me started telling my story was to take the “In Our Own Voice” class through NAMI because it helped me learn how to organize my thoughts. As time has progressed I have learned how to tailor my story for the specific audience I am speaking to.

Allison volunteering as a scenario trainer for the Dallas Police Department

Have any of the Partnership Principles you developed with the Team of Advisors helped you in your work with organizations like NAMI or the police department?

I would say “Respect each Partner” is something that resonates with me as I think of my journey. I have learned when I need to say no to a speaking engagement if I am feeling overwhelmed. I feel very fortunate that the wonderful people at the police department understand and respect me enough to not push me to over extend myself. They are actually better about making sure I am not overextending myself than I am.

“Reflect, evaluate and re-prioritize” is another partnership principle I live by. I have learned it is okay to move on when a relationship is no longer working for the good of both parties. I remember how difficult it was to step down from my position on the NAMI Dallas board of directors. I had been serving for over two years and felt that I wanted to put my energy into my training. I realized in order to stay healthy, I cannot overextend myself, and that meant giving up something if I wanted to take on a new role.

What advice do you have for other patients who want to learn more about partnering with organizations?

Be creative! I NEVER imagined what attending support groups was going to do for me. I would never have met some of my closest friends or had the opportunities to work with some of the best organizations if I didn’t go to that first meeting. Each time I tell my story, it helps me work on my recovery to a healthy life. I encourage everyone to try something new and see where it takes you. You will probably be surprised.

 

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PatientsLikeMe Co-founder Ben Heywood reflects on a recent visit from Dr. Jill Biden

Posted June 10th, 2016 by

Last month, PatientsLikeMe was honored to host a special visitor — Dr. Jill Biden was in town as part of the Cancer Moonshot Initiative announced by President Obama in his 2016 State of the Union Address. She made time to stop by our office to learn more about how PatientsLikeMe works and how members use the site to manage their health and improve outcomes.

During her visit, Dr. Biden was greeted by Co-founder Ben Heywood, who introduced her to some of the folks behind the scenes here at PatientsLikeMe. Ben sat in on a roundtable discussion with Dr. Biden and four patients from our community — Phyllis, Jackie, John, and Laura.

Here’s what he had to say about what the experience meant to him and PatientsLikeMe…

Ben Heywood and his mother, Peggy Heywood (left), pose with Dr. Jill Biden during her visit to PatientsLikeMe.

PatientsLikeMe was founded on a simple idea: when patients connect to share their experiences, they can learn from each other how to better manage and treat their disease, and improve their outcomes. We’ve been honing the way we help our members do this for over a decade now, but Dr. Biden’s visit last month was external validation of this simple idea inspired by my brother Stephen’s ALS — and the not-so-simple work that our members and our team are doing now on a much broader scale. It’s important that policymakers understand the challenges of those with chronic illnesses and what it’s like for them to live within today’s medical system.

I think what resonated most with Dr. Biden was hearing our members’ stories. We invest so much money in healthcare and have made incredible strides in technology and advancing treatments. Yet traditional clinical care only accounts for a certain percentage of outcomes. It doesn’t encompass the rest of a patient’s life and environment — access to good nutrition, financial stress, daily life — which are likely to have as significant an impact on one’s illness.

It’s important to understand the full narrative of the patient experience in order to begin to think about that problem more holistically. As Dr. Biden looks at big data and other things, I hope it will bring new focus to the importance of understanding this narrative and putting it into a data framework.

From a policy standpoint, there are clearly things that need to be advanced. The Affordable Care Act took away pre-existing conditions for health insurance. That needs to be considered in other areas like life insurance, long-term care, and other areas. I believe we should be talking more about laws around preventing data discrimination and protecting personal medical information, much like in GINA (the Genetic Information Nondiscrimination Act). I hope Dr. Biden will continue to advocate and fight for patient-centricity. This means investing in and doing all the work necessary to meet patients where they are, give them access to meaningful data, and allow the most active and engaged patients to show what’s possible with their own information.

Dr. Biden’s visit was also significant on a personal level. I lost my brother, Stephen, and Dr. Biden and my mother lost a son. That’s a strong shared connection. What I think Stephen did for our family was give us the moral authority to amplify the voice of patients. While it’s amazing what medicine can do today, we can still do better.

I believe the Bidens experienced something similar to the calling we felt — the realization that that fundamentally, the healthcare system should be about patients, for patients, and designed to help patients get the most benefit. And the starting point is effectively measuring what patients value most in their care.

 I’m very proud of our team and how we’ve worked together with our patient community to demonstrate what’s possible in healthcare. For me personally, it’s really powerful and exciting to have the spotlight shown on that and to really highlight this part of our work.

Roundtable discussion with Dr. Biden

 

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Precision medicine: The role of genetic testing in diagnosis and treatment

Posted June 8th, 2016 by

We’re opening up a dialogue about precision medicine and pharmacogenomics with the support of our partners at Assurex Health what they are, how they might benefit patients like you, why medications may work for some and not for others – and many of you have been sharing your thoughts with the community. To keep this conversation going, today we’re talking about the role of diagnostics in genetic testing.

First of all, what are diagnostics? Chances are, you’ve probably already had a diagnostic test, but just didn’t know it. A diagnostic test is any kind of test done to help diagnose a disease or aid in treatment decisions. If you’ve ever had a blood test, strep test, etc., then you’ve had a diagnostic test. Diagnostic testing will play a central role in precision medicine. We sat down for a chat with Dr. Bryan Dechairo, Senior Vice President, Medical Affairs & Clinical Development at Assurex Health to learn more about this.

Can you tell us more about the role of diagnostics in precision medicine?

Diagnostics are key in precision medicine because they may provide a way to identify unique patient characteristics, which may influence how patients will respond to medications. Within the population, you have patients who respond well and patients who respond poorly to a given medication. To help providers make a decision about medications, diagnostic tests can be based on biological markers (for instance, when we look at things like glucose levels) as well as the DNA code that you’re born with. But characteristics like age, gender, previous medications that have failed, etc., are also diagnostics – any of these become the pieces of information that help add precision to which types of patients will respond to medications.

Specifically, how can genetic tests help patients with depression and other psychiatric conditions?

For starters, we’re getting closer every day to being able to use genetics to help identify which type of depression a patient is more likely to have. More accurate diagnosis, which is very hard in psychiatrics, help the provider to decide which type of medication will work best for treatment. Certain genetic tests may help the provider understand how an individual processes medication. Genetic information may be a piece of information that can help providers and patients understand which medications may be more or less appropriate for the individual.

What kinds of new developments have you seen in recent years?

I’ve been working in this field for over 20 years and I started when the ability to analyze genetics had just come about. It was very complicated with very few successes. Fast forward into the last decade and a half and we understand how medication works in the brain, the neuropharmacology in the brain, and the genetic pathways. In 2007, people were looking at markers individually, but medication is far more complex than individual markers. When you look at a single genetic change in a gene, it doesn’t necessarily add up to how well a medication could work because it’s just a small percentage of the overall picture. Initially, it didn’t show beneficial outcomes to patients. However, with combinatorial pharmacogenomics, we can now combine multiple genetic markers and weigh the contribution of each marker to specific medications. We can weigh and consider changes specific to each patient to help support an individual decision across multiple markers to determine the best treatments.

Combinatorial pharmacogenomics has the potential to help get patients off a downward spiral by getting them to the right medication faster. In trial and error prescribing as many as 50 percent of prescribed medications fail the first time and 71 percent of medications fail the second time. This can leave patients feeling like nothing can help them. For some patients without proper treatment, depression can continue to get deeper and that cycle needs to be broken sooner than later.

What function do you see precision medicine and pharmacogenomics having in the industry in the next few years and going forward? How do you think this field will continue to evolve?

Today precision medicine has a place in the market. For instance, in the area of treatment selection for depression there are already over 300,000 patients genetically tested in the U.S. While this is a field that’s certainly still growing and developing, with several questions still on the table and tools we use evolving – there are still patients now who are seeing benefits from it. Genetics is just one component, but it’s one of the most important. We can also start tapping into electronic health records and mobile apps or ask patients about environmental exposures that can influence health. As we gather more data from first diagnosis and then throughout life with chronic illnesses, all of a patient’s data will come together to enable better predictions for treatment outcomes leading to improved response rates. Genetic data can also improve drug development by helping identify new disease targets, as the goal is always a 100% response rate.

What advice would you give to a patient who is interested in taking a genetic test, but isn’t clear about the potential benefits or how they should go about initiating the process?

Always talk to your healthcare provider first and ask what tests are available. If your doctor is unaware of genetic testing options then you should be able to call a customer support hotline of companies that are offering the test.

 

Please Note:  This post is part of a series of educational content supported by Assurex Health in partnership with Patients Like Me.

 

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Patients as Partners: Cyrena talks empathy and assertiveness

Posted June 6th, 2016 by

We’ve been talking to 2015-2016 Team of Advisors about the Partnership Principles they put together and how they use them in their personal health journeys. Next up is Cyrena, who’s living with bipolar II and lupus and recently completed her PhD in pharmacology. Below, she talks about managing multiple conditions, getting on the same page as her doctors, and the need to be both empathetic and assertive in your relationships with your care teams. Plus, stay tuned for more from Cyrena soon!

 What I’ve learned: Know your needs, make shared decisions

As a graduate student in pharmacology with an interest in mental illness and immunology, I usually find myself in a unique position in the “hot seat.” I don’t view my physicians as all-knowing entities. I am not a physician, but I have a knowledge base, both about disease processes and my own body. What I bring to the table is just as important as what they bring, and therefore I view my interactions as a partnership on mostly equal footing. (After all, I don’t have prescribing privileges!)

Studies at the PhD level require a level of stamina and mental acuity that aren’t always present in patients with lupus and bipolar disorder. When I am with my physicians, I have to express that my needs are likely different than the typical patient. I can’t have medications that dull my thinking or alertness. I have to keep things moving along, so even if I have a flare I may be able to slow down but I can’t completely stop and rest. Once we are on the same page regarding my needs and expectations, we are in a position to make shared decisions that work best for my health and my studies.

Having both a mental and immune illness has been an eye-opening experience. Because psychiatry and mental health is essentially isolated from other areas of medicine, I have had to be the foreman in the factory, making sure that all the parts go together and everything works as it should. I have been diagnosed with bipolar disorder longer than lupus, but in almost every encounter outside the psychiatric setting, it is basically an afterthought. I have to assert its importance in my health and wellbeing and try to bridge the silos. Part of my research involved the effects of the immune system on mental health, so I am intimately aware of the relationship between the two in my case as well as in the scientific literature. Fortunately, I have a psychiatrist who is well versed in the relationship between mental illness and physical chronic illness, so I am not completely alone in my struggle.

“Clinical folks are people, too. I am an empathetic and assertive patient, and I am sure that has eased my relationships with clinicians throughout my illness experience.”

 

For those who shoulder multiple illnesses and significant career expectations, it is critical for the patient-clinician partnership be clear on how treatment will impact those expectations, and that what is “most important” can change at any point. At the same time, recognition of the new or ongoing limitations of illness and perhaps being willing to reevaluate the history of illness and treatment plan, even if it may result in career setbacks.

Partnering four ways: Advice from one patient to another

First and foremost, know who you are and what you want. The clinical environment can be intimidating, and when you’re sitting in the patient’s seat, your mind can completely blank out and you find yourself going along with whatever they tell you to do.

Secondly, know who they are and what they want. Clinicians have goals as well, and if you are managing multiple conditions, those goals may be in conflict with one another. Be prepared to advocate for yourself in the event of pushback, but also acknowledge and appreciate when their goals align with yours.

Third, stick up for yourself. If you don’t like something, whether it’s a treatment plan or the clinician themselves, be willing to say “no.” I have no problem walking away from a clinical environment that does not suit my needs or will not work with me. I recognize that others may be limited in their choices by geography or insurance plans, but voting with your feet can send a message that comments or complaints may not.

Fourth, recognize the limitations of your clinicians and the medical system. Your appointments aren’t 15 minutes because that’s what the physician wants. They hate it too! There are forces outside the patient-physician relationship that are invisible to the patient but omnipresent in the office visit. My mother is a nurse, my research advisor was an MD, and I spent a little time in medical school. I am aware of the pressures on the other side and try to give most clinicians the benefit of the doubt. A little empathy goes a long way. It may not seem like it, but clinical folks are people, too. I am an empathetic and assertive patient, and I am sure that has eased my relationships with clinicians throughout my illness experience.

 

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Patients as Partners: John and David share their clinical trial experiences

Posted June 1st, 2016 by

We’ve been hearing from members of the Team of Advisors about how they’ve used the Partnership Principles in their health journeys. Recently, we sat down with John (Dockstoy), living with ALS, and David (Davidgewirtz), who’s living with lung cancer. John and David are both interested in research and have been involved in a few clinical trials. Below, they share their firsthand trial experiences, offer up some advice for others, and talk about the importance of collaboration and mutual respect with their care teams along the way.

Can you tell us a little about the clinical trials you’ve participated in?

John: I took part in trials at:

  1. Massachusetts General Hospital (September 2014) – phase 2, randomized, double-blind placebo-controlled Multicenter Study of Autologous MSC-NTF Cells in Patients With ALS
  2. Bronx VA – Brain and nerve stimulation for hand muscles in spinal cord injury and ALS
  3. Weill Medical College of Cornell University – Safety of Capryclic Triglycerides in ALS: A Pilot Study

Team of Advisors member David, living with lung cancer

David: I was diagnosed with stage four metastatic lung cancer just about five years ago. June 2011. Since that time my only form of treatment has been targeted therapies which were available to me through clinical trials. The first clinical trial I received the drug Erlotinib known as Tarceva for three and a half years. The second clinical trial I am now on for about fifteen months targets a mutation that is responsible for resistance to Tarceva. The Clovis pharmaceutical company makes the drug with the code name C01686 which does not have FDA approval and Clovis recently disclosed that the drug has been withdrawn from future development. Both drugs have enabled me to live a very high quality of life and unless told nobody would know I had a terminal disease.

Clinical trials require the patient to be an active participant in the treatment modality. For me both clinical trials required that I have monthly visits to the clinic for blood work and scans every two months. The routine of my CT scans include my chest, abdomen, and pelvis plus a whole body bone scan. Normally I spend six hours at the hospital to compete these tests. That I am monitored very closely is a double edged sword. The downside is the frequency of scans exposes me to significant radiation which overtime is also associated with cancer. There is also generalized anxiety that comes with this routine. When you’re done with one cycle which includes a discussion with the oncologist about the radiology report, you automatically start to think about the next cycle. The silver lining in this cloud is that detection of new disease is caught very early and more often treatable than not – a really good benefit, which takes some of the sting out of the routine.

Have any of the partnership principles helped you get involved in these clinical trials?

John: I believe all principles apply. Respect is key; and alignment and teamwork from both parties involved.

David: “Know your needs” was the principal driver of why I entered a clinical trial. This principle requires that the expectations of the patient (me) are aligned in a partnership with the goals of the oncologist. In my situation there was a shared expectation of the value of clinical trial. In collaboration with my oncologist we discussed the likely benefits, side effects and the efficacy of the trial as a treatment plan for my advanced stage lung cancer. We shared the belief that the benefits of the trial far exceed the risks associated with taking Tarceva. We shared the value that (1) I would receive state-of-the-art treatment with the expectations that the drug Tarceva would (2) not not only control my cancer, but would extend my progression free survival of my disease.

How do you decide if a clinical trial is right for you?

Team of Advisors member John, living with ALS

John: Timing is a critical decision factor. What I mean by that is many clinical trials have two-year and three-year exclusion criteria. Also, location — most trials do not reimburse for travel or nominal reimbursement. You must believe that the trial will have a benefit, not only to you but for those to follow.  

David: In collaboration with caregivers the patient must know his/her needs in terms of the benefits and risks of entering a clinical trial. This requires that the care team fully explain the benefits of the trial versus the risk of participating. A phase one trial poses the most risk to the patient with an uncertain outcome. In contrast, a phase three trial poses the least. For example, my first clinical trial was a phase three trial where I was given the drug Tarceva with expectation that my medium progression free survival would be 12 months. In my case I did not progress until 3.5 years. Truly a great outcome despite some manageable side effects or risks.

A patient also has the opportunity to enhance the understanding of their disease. All types of clinical data captured in the study helps organizations like PatientsLikeMe market data to pharmaceutical and insurance companies who are stakeholders needed to fast-track new drugs from the bench to the clinic. In the end, your participation along with others may save or prolong the quality of your life. This possibility was the primary driver for me to enroll in another clinical trial that has kept my cancer in check, now five years, with minimal side effects.

What advice do you have for other patients who want to learn more about participating in clinical trials?

John: Research, research, research! Scour the Internet for details, speak with friends and family, ask your doctor what they think and what they see on the horizon for new trials. Be prepared to look at what’s next in clinical trials so as one completes you can start up another.

David: The decision to participate in clinical trials encompasses many of our PatientsLikeMe partnership principles. For example, where you are in your treatments phase may dictate what principles are more important than others. If you are at the start of your treatment, then you must have a very good understanding of what a clinical trial can do for you — how much more quality time the treatment offers. You can only arrive at this decision point if you and your care team have a shared understanding of the benefits of participating in a clinical trial versus pursuing a different line of treatment. Through my experience with clinical trials you are well served if you operate under the assumption that participation is a shared responsibility. Alternatively, if you reach a milestone in your treatment where you must go to another line of treatment then it is critical to reflect, evaluate and reprioritize if your current care team is the right team to meet your needs. Finally, regardless of the phase you enter a clinical trial, you must self-educate yourself

That means you have done some basic research by:

  1. Reading about relevant clinical trials on sites like the National Cancer Institute, which has a listing and description of all clinical trials in the U.S. and worldwide.
  1. Preparing yourself for entering a clinical trial by visiting the government website that explains what patients and caregivers should know about participating in clinical trials.
  1. Participating in organizations like PatientsLikeMe that have communities where patients share their treatment experiences, side effects and their success and failures. Personally, these organizations have empowered me through emotional support and knowledge of other clinical trials that may become options for me while I travel on my journey.

 

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Arthritis Awareness Month: Shedding light on an invisible condition

Posted May 27th, 2016 by

It’s National Arthritis Awareness Month, and while more than 50 million Americans live with it, arthritis is often an invisible condition. It can be hard for those who don’t have it to understand what it’s all about and how it impacts a person.

So let’s test your arthritis knowledge — did you know any of the facts below1?

  • 1 in 5 people over 18 live with arthritis
  • Arthritis pain can occur in several places throughout the body including the neck, back, shoulders, and hips — and even in the skin, heart, and lungs
  • Arthritis is an umbrella term used to describe over 100 medical conditions and diseases like gout, lupus, rheumatoid arthritis, and fibromyalgia
  • People often associate this condition with old age, but while the risk does increase with age, anyone can have arthritis

What can you do?

The Arthritis Foundation has launched a #SeeArthritis campaign on Facebook, and over 10,000 people have turned their profile pictures green to raise awareness. If you’re living with arthritis, use the hashtag and go green!

But first, head over to the forum and help us get the awareness going by sharing the one thing you want others to know about living with arthritis.

 

 

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1http://www.arthritis.org/about-arthritis/understanding-arthritis/


“I learned that life is precious.”

Posted May 23rd, 2016 by

Meet Jenna. She’s been part of the PatientsLikeMe Team since back in 2012 when she first started as an intern. And for Jenna, working at PatientsLikeMe is personal. Her father was diagnosed with ALS when she was just eight years old, and so, being part of PatientsLikeMe is especially meaningful for her.

For ALS Awareness Month this year, Jenna volunteered to talk on camera about how the condition impacted her childhood; sharing how a family banded together to care for a father, husband and friend.

“I learned that life is precious,” she says. “And I learned at an early age that it’s important to do what you love and do something that makes a difference.”

Hear her story!

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Patients as Partners: An open letter from Craig to the “normals”

Posted May 20th, 2016 by

We’ve been hearing from members of the Team of Advisors about how they’ve used the Partnership Principles in their health journeys. For Craig (woofhound), who’s living with fibromyalgia, it’s important to forge strong relationships with “normals,” or people who don’t know what it’s like to live with a chronic condition. By talking openly about illness, Craig believes, we can bring about more compassion and understanding for patients.

Below, Craig illustrates the need for open, honest partnerships with “normals” in an open letter, dispelling some misconceptions and vividly describing a day in the life of someone with fibromyalgia.

What You Don’t Know About Your Friend’s Fibromyalgia

So, someone you know (and possibly love) has told you they have fibromyalgia. With all of the medical information available today and A-list celebrities like Morgan Freeman announcing that they have it, most people have an idea of what this disorder is. I’d like to help with that understanding by telling you about the things you probably DON’T know about this very complex condition.

Let’s begin by listing some of the famous people you may know who have fibro. Susan Flannery, Sinead O’Conner, Michael James Hastings, Frances Winfield Bremer, Morgan Freeman, Mary McDonough, Janeane Garofalo and AJ Langer have all acknowledged that they have fibromyalgia.

About 5% of the population — that’s nearly 1 out of every 20 people — have it. Let’s start with a reminder of the more common description of fibro. Fibromyalgia is a complex neurological pain disorder wherein the brain forgets how to evaluate and respond correctly to pain signals in the body and favors a new standard of “If there’s pain present the only level I know is MAXIMUM DISTRESS.”

Let’s dispel a couple of common misconceptions while we’re at it, too:

1: It’s not real pain, it’s only in your head.

This is probably the most damaging and oft-heard misconception about this disorder. Let’s begin by scientifically saying that ALL pain is “IN YOUR HEAD”! Pain is a brain response to negative stimuli. Fibromyalgia pain isn’t suddenly a new experience for the mind; it’s a disorder where the brain begins to mis-categorize pain and reacts to it as though it were “always on” and always worthy of the highest level reaction.

Your friend isn’t overly dramatic or attention seeking. Their brain is indeed reacting to a painful stimulus. They have no recourse but to feel the pain that their mind is presenting to them any more than they could not react to touching a burner on the stove. Take it from a fellow fibromyalgia sufferer; our minds do a great job of sharing that very real pain response within us.

2. Fibromyalgia is a “rare” condition.

The more we research fibromyalgia and the more we know about it, the more we realize that it isn’t very rare; it’s more likely that it’s underdiagnosed and underreported especially among males with fibro. A chronic pain disorder doesn’t sound like a very “macho” condition, and many men don’t wish to seek help with the syndrome for fear of being called unmanly, or wimpish.

Now onto the things you might not know about living with fibro. Any chronic pain disorder such as fibro takes a massive toll on the individual, their partner, and their loved ones. This toll is even worse when those family and loved ones aren’t well informed about the disorder (see misconceptions above). Many individuals living with fibro must continue to work, and their work suffers from sick days and loss of productivity.

Many relationships are tested by fire when one has fibro. It’s difficult for their partner to understand that a medical condition could have SO MANY unrelated symptoms and cause SO MUCH fatigue and pain that one ends up spending most of the day in bed instead of being the alert, energetic and happy person everyone once knew. Families, marriages, and relationships have fallen apart due to the fallout from fibro.

Now I’d like to talk about a term that I like to call the “seduction of the bed.” When you spend the day in pain, go to sleep with pain, and wake up feeling unrefreshed and still in pain, there’s a strong desire just to remain there in your comfortable bed. It’s the only place you can be that minimizes the pain, pressure, and discomfort. I hear my bed calling to me all the time; it’s seductive promise of just a smidgeon less pain if I’ll but give in and crawl back under the warm covers.

Most of us who live with this condition don’t have the choice of staying in bed all day. We have jobs to do in our home or away in an office. We try not to let our pain and fatigue show through the thin veneer of a smile that we wear in an attempt not to draw attention to ourselves. How do we cope with all of this? The day after day after day of constant pain and fatigue slowly begin to take their toll. Finally, we come to understand that we must learn how to prioritize the events in our lives every day and most times we decide those priorities at the very last moment. We have to learn, and help our friends to understand, that yes I accepted your invitation to visit tomorrow, but I must evaluate my fatigue and stamina regularly, right on up to the time of that expected visit to determine if my body is also willing to make that effort.

Sometimes the answer to that evaluation is no. Maybe today was filled with too many of the myriad of seemingly unrelated symptoms that fibro-mites experience. (Warning, the symptoms I’m about to relate aren’t “pretty” or easily whitewashed.) A full day of irritable bowel syndrome (IBS), where we have mind-numbing cramps that double us over in pain followed by the immediate and overwhelming need to rush to the bathroom for a bowel movement. Maybe today was filled with cognitive fog (CogFog), and even the simplest of words refuse to come to mind when we need them in a sentence leaving us sounding like a blubbering idiot. Maybe today is the day where any piece of clothing touching some sensitive part of our body is too painful to endure, and all we can wear are some light underwear or nothing at all.

We really do care about you and really wanted to visit, but if we listen honestly to our bodies we can’t afford the toll of that visit. We know that makes us come across as “flaky” especially if we’ve had to cancel at the last minute, but if you understood this condition you would see that we don’t really have the choice. We have to prioritize the events in our lives continually; all weighed against the insurmountable weight of this little condition called fibromyalgia.

 

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“TransFatty Lives”: An interview with ALS filmmaker Patrick O’Brien

Posted May 19th, 2016 by

Meet Patrick O’Brien, a.k.a. “TransFatty,” whom we met through our friend and longtime PatientsLikeMe ALS member Steve Saling (Smooth S) after catching up with him earlier this year.

Patrick is one of Steve’s housemates at the Steve Saling ALS Residence at the Chelsea Jewish Foundation’s Leonard Florence Center for Living and he’s also an award-winning filmmaker.

Back in 2005 when he was diagnosed with ALS, Patrick was making his mark on New York City as a rising filmmaker, DJ, infamous prankster and internet sensation. He called himself “TransFatty,” as a nod to his love of junk food. After his diagnosis, he decided to keep the cameras rolling – on himself. “TransFatty Lives” is the result of a decade of footage that shows his progression with the disease and it’s gone on to win the Audience Choice Awards at both the 2015 Tribeca and Milan Film Festivals.

We visited Patrick last month to chat with him about the film and life in general. Here’s what he had to say.

“TransFatty Lives” is available on iTunes, Amazon, Google Play, and Xbox.

 

 

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What’s your experience with accessing your electronic medical records?

Posted May 17th, 2016 by

Hi everyone! I’m Sally Okun, Vice President for Advocacy, Policy and Patient Safety at PatientsLikeMe. Most of you probably already know me, but just in case you don’t, I really focus on bringing the patient voice to affect better treatment, services and care, and to be sure that the needs of patients are at the front of healthcare discussions. I’m also the link between PatientsLikeMe and government and regulatory agencies.

And that’s what brings me to the blog today. The Government Accountability Office (GAO) is working on a new research study and they want to hear directly from patients like you about your experiences with your electronic medical records. Specifically the team at GAO is interested to learn about your experience accessing your health information electronically for viewing it yourself, downloading it to a computer or other device and/or sending it to someone else of your choosing.

Find out more below about the GAO, this new research project and who to contact if you’d like to participate.

The Government Accountability Office (GAO), an agency that evaluates federal programs for Congress, is conducting research to examine patients’ experiences with electronically viewing, downloading, or transmitting their health information, which will be incorporated into a publicly available report. GAO would like to hear directly from consumers to learn about any relevant experiences they may have had in this regard (e.g., viewing health information in an online patient portal, downloading health information into a personal health record app, sending/receiving health information to/from a physician).

If you would like to volunteer to discuss your experiences with GAO, whether positive or negative, please send an email with your first name directly to GAO at HealthInfoAccess@gao.gov by June 7, 2016. GAO will contact you to schedule a short, anonymous telephone interview at your convenience to discuss your experiences.

GAO will NOT collect any personal information during the interview, such as your full name or other identifying information. In addition, GAO will only ask questions about your experiences electronically accessing your health information, not any questions about the nature of your health information itself. Any information GAO collects from consumers will be published in a manner that protects your confidentiality and anonymity.

Let your voice be heard!

 

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Precision medicine: Why medications work for some and not for others

Posted May 13th, 2016 by

Last month we started a conversation about precision medicine, pharmacogenomics and what they could mean for treating patients with certain conditions. We want to continue talking about it and learning more from experts and each other, but before we do, here’s a refresher in case you missed the first post.

Precision medicine is a field that factors your genetic makeup, environment and lifestyle into how you may respond to different treatments. Pharmacogenomics is the part of precision medicine that determines how your genes affect your response to particular drugs. In short, precision medicine aims to help your health team find a solution that is specifically designed to help you.

This brings us to today’s topic: Why is it that medications work for some people and not for others?

There’s no simple answer, but let’s try to make it as easy as possible.  

A handful of your own genes influence how you respond to medications and everyone processes medications differently. For some, even a small amount of a medication may be too much. If your body can’t process (metabolize) the medication, you may have side effects but not experience the intended benefits of the treatment. The opposite can happen, too. The same medication may not work because you process it so rapidly that the dosage would need to be very high for it to work. And, of course, the normal dose of a treatment may work just fine for you.

But it’s not just genes that can affect how you metabolize medications. Many other factors like age, sex, ethnicity, health conditions, and even foods can influence it. For example, drinking grapefruit juice or eating cauliflower can change how well your body processes certain medications and affect how well it works for you.

So, what kind of metabolizer might you be? Here are the basic four as our friends at Assurex Health lay them out:

Extensive (normal) – Breaks down medications normally. Has normal amounts of medication at normal doses.

Ultrarapid (fast) – Breaks down medications rapidly. May not get enough medication at normal doses.

Intermediate (slower) – Breaks down medications slowly. May have higher levels of medication and side effects at normal doses

Poor (slow) – Breaks down medications very slowly. May have higher levels of medicine and side effects at normal doses.

And get this – it isn’t just about how one gene influences the metabolism of a treatment. It’s about how all of your genes work together. That’s called the combinatorial effect.  For example, Assurex Health’s GeneSight test measures variations of multiple genes in your body and then weights them together – rather than one at a time – which may provide additional insight into genetically driven information for each medication for you. So by looking at how all your genes work together, it’s possible to get a fuller picture of how you might metabolize a potential treatment.

So what’s the takeaway here? A few things. Precision medicine isn’t a cure all. It’s a field that’s continuing to emerge and evolve and there is much more to learn. Genetic testing may help narrow the choices of what medications are best for you by removing the medications that are less optimal.  We also know it’s not measuring many important factors that could impact for how well you respond to treatments.

This is why we want to hear from you. Members have been sharing their opinions and concerns in the forum, so let’s keep the discussion going. And stay tuned for Part II of this blog next week where we chat with Dr. Bryan Dechairo, Senior Vice President, Medical Affairs & Clinical Development at Assurex Health about the role of diagnostics in precision medicine.

Please Note:  This post is part of a series of educational content supported by Assurex Health in partnership with PatientsLikeMe.

 

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