We Are Advocates

Patients As Consumers - We Must Advocate for Ourselves

Things change...
Things change over time. That's pretty much a given concept. Attitudes change over time, some more quickly than others. When I was growing up, doctors were... well, revered is probably a pretty good word. Everyone respected doctors. It was pretty much unheard of for anyone to question them. When the doctor told you to "take your medicine," you did it, without ever even thinking about why. We would never have dreamed that a doctor might have been mistaken about anything, ever.

It's not cliché to say that things were simpler then; it's just a fact. There were far fewer medications, fewer specialists. What we're finding now is that it's also true that many illnesses and diseases went undiagnosed and untreated. Migraine disease and many headache disorders are among those...

Patients are consumers, customers...
So, who has the patient become? The patient has become a consumer, a customer of health care services. The Merriam-Webster Collegiate Dictionary defines a consumer as, "one that utilizes economic goods," and a customer as, "one that purchases a commodity or service." The Merriam-Webster Medical Dictionary defines a patient as, "a client for medical service." This makes a great deal of sense, especially given the rising cost and percentage of income associated with health care...

Continue reading Patients As Consumers - Managing Healthcare and the Healthcare Team.

Migraine and headache research - off to DC!

Not a single medication has ever been developed specifically for Migraine and headache prevention. Not one, yet we have seven triptans (acute medications used to abort Migraine attacks).

For quite some time, I didn't understand how or why that would be. Some people theorized that the pharmaceutical companies could "cure" Migraine disease, if they wanted to, but were making enough profit on medications such as triptans that they didn't want to produce the "cure." Although I can understand that line of thinking, that's not the case.

In a nutshell, I found that we owe our lack of effective treatments to lack of National Institutes of Health (NIH) research funding for Migraine disease and headache. Most disease research is funded by the NIH. Once that research is available, the pharmaceutical companies have a basis from which to develop treatments. That's why some people say that one medication and six "me-toos" - the triptans - have been developed for Migraine instead of multiple more unique medications.

Take a look at this excerpt from an editorial published in Headache: the Journal of  Head and Face Pain:

"Abundant evidence shows that the seminal studies that lead to innovative pharmaceuticals are most often performed in publicly-funded research laboratories, not those of the pharmaceutical industry. Federal funding of research on epilepsy has always hugely out-paced that for migraine. Over the past several years, mean annual NIH expenditures for epilepsy have been ~$101M compared to ~$13M for migraine, with a comparable disparity in funding every year since 1972 - the earliest year of available records for NIH grants.

What did the federal funding for epilepsy purchase? Fundamental research beginning in the 1970's led to the development of epilepsy animal models that enabled the screening of drugs for anti-convulsant properties. The NIH then funded and provided oversight of this program of accelerated screening of compounds developed by academia and industry. Thirty years later, patients with epilepsy have a considerably wider set of therapeutic options.

Headache medicine is also on the threshold of new insights into the pathogenesis of the primary headache disorders. Animal models relevant to drug screening are beginning to appear. What is needed now is a commitment to headache medicine from federal agencies similar to that which has been appropriately extended to epilepsy... Based on the example of the epilepsies, real benefits will likely be felt by headache patients over time in the form of improved access to specialty care and the development of novel effective therapies."(see link to the full editorial below)

Do I hear someone asking, "So, when is someone going to do something about this issue?"  The answer to that question is ... Now.

Allow me to lay it out for you with answers to the questions journalists are trained to ask...

Read more in Migraine and headache sufferers - We're off to DC on your behalf!

An invitation to express yourself about pain!

American Pain Foundation and The HealthCentral Network:
Call for Artistic Submissions for Creativity and Pain Exhibit

Deadline for Entries is September 20, 2007

The American Pain Foundation (“APF”) and project partner The HealthCentral Network, Inc. (www.HealthCentral.com) is accepting entries for the 2007 APF Pain and Creativity Exhibit. This online exhibit will showcase all contributing artists and their work, including visual arts, inspirational videos, poetry, and quilt squares. Select submissions will be chosen for special promotion by APF. The Pain and Creativity community will be ongoing, but to be considered for special honor in the Exhibit, and at the APF’s 10th Anniversary Celebration in October, submissions must be received by September 20th. Entries can be submitted at www.healthcentral.com/chronic-pain/apf/ 

“HealthCentral.com is pleased to be working with the American Pain Foundation to host the Pain and Creativity Exhibit—a virtual space where anyone can share their painting, drawings, sculpture, and video with other individuals dealing with pain,” said Bill Allman, General Manager of HealthCentral. “Art can play a major role in expressing and working through chronic pain, and we believe that the Pain and Creativity Exhibit offers a flexible, supportive environment in which to do this.”

“Recognizing that we are all creative and have the power to turn adversity into opportunity, we would like to expand our Pain and Creativity network to connect artists and their expressions of pain through an online exhibit of creative work,” said Will Rowe, Executive Director of APF. “Our hope is that the submissions to the Pain and Creativity Exhibit come in a variety of forms, including film, sculpture, words, painting and quilt blocks, from people who have pain or from people who are affected by pain.”

Entrants can contribute poetry, prose, a digital photo of their artwork, or an inspirational video that tells the story of how pain can affect one’s life. Along with their submission, entrants also need to include a paragraph that describes how their piece of art represents their pain experience.

A related project sponsored by APF in conjunction with the Lagniappe Project of Baltimore is calling for the submission of quilt blocks for the inclusion in a quilt which will reflect the experience of pain. Quilts are a literal and figurative symbol of comfort and the joining of patchwork is a symbol of unity and community. Through the block design, construction, and joining to create a finished quilt, we hope that the artist finds comfort and unity. The finished quilts will be exhibited at the APF’s 10th Anniversary Celebration in October and will be used for fundraising purposes through the Celebration Auction and/or through other fundraising efforts. For more information on quilt square requirements, CLICK HERE.

The deadline for all submissions is Thursday, September 20.

About The HealthCentral Network
The HealthCentral Network, Inc. (www.healthcentral.com) is a new and unique online offering, comprised of over 30 general health and highly specific condition and wellness web properties, each committed to offering a voice in everyday and personal language people can understand and connect with at critical points in their lives. Each site provides timely, interactive, in-depth and trusted medical information (from Harvard Health Publications among others), and connections to leading experts and thousands of people who share their related experiences and inspiration.

About the American Pain Foundation
Founded in 1997, the American Pain Foundation is an independent nonprofit 501(c)3 organization serving people with pain through information, advocacy, and support. Our mission is to improve the quality of life of people with pain by raising public awareness, providing practical information, promoting research, and advocating to remove barriers and increase access to effective pain management. For more information, visit www.painfoundation.org.

 

WeAreAdvocates receives "Top Site" Award

We're pleased to announce that WeAreAdvocates is a recipient of the HealthCentral Network's 2007 "Top Site" Award in the area of Chronic Pain. Many thanks to the people at HealthCentral who chose to recognize this blog.

Here's a copy of the press release about these awards:

HealthCentral.com Honors Top Web Sites and Blogs Dedicated to Specific Conditions and Diseases

First Annual Top Site Awards recognize sites committed to informing and inspiring online health communities

ARLINGTON, Va., Aug. 1 /PRNewswire-USNewswire/ -- The HealthCentral Network, Inc. (http://www.healthcentral.com/), a leading online consumer health destination, today announced its First Annual Top Site Awards for the best Web sites and blogs dedicated to educating and supporting individuals living with specific conditions and diseases and fostering the online community.

HealthCentral.com's awards recognize the Web's top sites, from individual blogs to small Web sites, committed to providing personal, quality information, support and inspiration to patients, caregivers, and their friends and family. Many of the 26 condition-specific Web sites that make up The HealthCentral Network (THCN) will be honoring the top destinations in their communities. The recipients of the award share HealthCentral.com's mission in highlighting the patient voice in health information.

"Health information consumers rely greatly on the advice and personal experiences of friends and family in all facets of life and managing a health condition is no different," said Chris Schroeder, Chief Executive Officer and President of The HealthCentral Network. "This year's Top Site Awards recognize the importance of sharing and learning from other people who have real life experience dealing with each condition and join HealthCentral.com in providing trusted, personal information and support to their community."

A team of experts from each of THCN's condition-specific sites chose this year's top destinations after reviewing and analyzing the most popular and influential Web sites focused on living with each condition.

The 2007 Top Site Award Categories

Acid Reflux	Diet & Exercise
Allergy & Asthma	Heart
Alzheimer's	Migraine
Anxiety	Prostate
Bipolar & Depression	Rheumatoid Arthritis
Breast Cancer	Schizophrenia
Chronic Pain	Sleep
Diabetes

Visit http://www.healthcentral.com/top-sites.html for a list of the Top Sites for each condition.

"Sicko" - It's time to pay attention to healthcare!

Have you seen Michael Moore's Sicko? If you have, what did you think of it?

The state of our healthcare system isn't a new topic. For anyone with health problems this is a critical issue. Most, if not all, of us agree that the U.S. healthcare system is broken. But, what do we do about it?

Sicko brings these issues to our attention, whether we like the move or not, whether we like Moore or not.

Three of the HealthCentral Network's experts have seen and reviewed the movie. It's well worth the time to read these reviews. You're welcome to post comments to the reviews as well.

Take a look at these reviews from The Insiders' View: Expert Patients on Michael Moore's Sicko.

As patient share of meds cost rises, treatment and adherence declines

The cost of prescription drugs is a major topic of conversation amongst Migraineurs and other patients who need prescription medications. Even for those who have insurance that covers medications, the amount paid by the patient has increased to consume a disproportionate amount of patient income and has left many patients with difficult medical and financial choices to make. Part of this phenomenon is coverage limits that affect the number of doses of triptans that are covered per month, a number that has recently been decreasing.

A review of previous studies indicates that an increase in prescription drug cost sharing is associated with a decrease in drug spending and use of pharmacies; and for some chronic conditions, higher cost sharing is associated with greater use of expensive medical services (doctor appointments, emergency care, hospitalization, etc.), according to an article in the July 4, 2007, issue of JAMA.

Read Increased Patient Share of Prescription Costs Negatively Impacts Drug Treatment and Adherence.

Bogus online "pharmacies" prey on patients

What is it about people who are ill or in pain that makes unscrupulous people think we're fair game for their scams and schemes? Medication prices are out of control. Many of us, even with insurance, are spending a disproportionate amount of our income on meds, and many are looking for sources of less expensive meds.

Scammers know that, and they don't give a damn about our health, only making $$ from our misery. Not a day goes by that I don't have at least a dozen emails from such scammers offering me lower prices on everything from pain medications to Viagra. BUT, there's a catch. We have no way of knowing if these medications are real or counterfeit or if they're contaminated with toxins. A friend of mine nearly died as the result of trying to save a few $$ on pain meds and getting contaminated meds.

There's been a recent and dangerous upswing in counterfeit medications being sold over the Internet. Please, before you consider buying meds online, take a look at FDA Warns of Counterfeit Medications from Online Pharmacies.

Be well; be safe!

Why Doesn’t Your Doctor Know About New Research?

Do you ever wonder why you seem to know more about your illness than your doctor?  Are you frustrated because your doctor is unwilling to let you try a new treatment protocol?  If you have one of the “controversial” illnesses like fibromyalgia or chronic fatigue syndrome, are you puzzled as to why some doctors still refuse to believe they exist despite piles of research proving distinctive physiological abnormalities? 

According to Dr. Kent Holtorf, the answer to all of these questions is: because most doctors do not read medical journals.  And even when they do happen to learn of new research, they are resistant to anything that they did not learn in medical school.  That’s not just opinion.  It’s the conclusion of a number of studies and articles published in the aforementioned unread medical journals. 

In the doctors’ defense, their lack of interest in new scientific knowledge is not totally a matter of apathy.  They are so overloaded with patients and paperwork, there just isn’t enough time to keep up.  And the insurance reimbursement system in America not only doesn’t help the situation, it actually encourages and even forces physicians to provide less than adequate care.  The worst doctors are rewarded financially because they see more patients, order fewer costly tests, and prescribe less expensive treatments.

Unfortunately, it is the patients who suffer.  We fight for new research only to have the results sit in some medical journal, read only by other researchers and a handful of truly dedicated physicians.  The result?  According to a National Institute of Health study, “The lag between the discovery of more effective forms of treatment and their incorporation into routine patient care averages 17 years.”  So we, the patients, suffer needlessly for 17 years while we wait for new discoveries to slowly leak into mainstream medicine.   

For more information, read “Why Doesn’t My Doctor Know This?” by Kent Holtorf, MD.

What Can We Do?

Is there anything we can do to make a difference?  We may not be able to make a significant impact on the medical community as a whole, but we can make a difference in our own personal healthcare.  We MUST take charge and manage our own healthcare. 

Find the latest research on your particular illness and take it to your doctor.  If you can’t get a copy of an entire journal article, at least print out the research abstract.  Ask your doctor to read the study so you can discuss it with him on your next appointment.  Also ask that it be included in your medical file.  If your doctor refuses to even look at new research, then it’s time to find another doctor –– and let him know why you’re leaving. 

To learn more about when it’s time to fire your doctor, read “The Patient as a Consumer” by Teri Robert.

Wishing you health and happiness,

Welcome Karen and Stacy!

Today, I'm thrilled to introduce you to Karen Lee Richards and Stacy Stone, both writers and patient advocates. They're joining me here to write about issues important to patients working toward the best possible healthcare and health.

Karen Lee Richards’ career as a writer and patient advocate grew out of her determination to learn more about her own illnesses. Karen first became ill in 1989, but it would be seven more years before she finally received an accurate diagnosis. As she began to talk with other fibromyalgia and chronic fatigue syndrome (aka myalgic encephalopathy) patients, Karen discovered that her experience was not unusual. At that time it was taking an average of approximately five to seven years for someone to be diagnosed with one of these illnesses. Understanding the frustration, fear and anguish patients go through during those years of not knowing what is wrong with them, Karen decided to do whatever she could to raise awareness about FM and ME/CFS. You can find Karen at ChronicPainConnection and  KarenLeeRichards.com.

 

Stacy Stone developed TMJ disorder when she was mauled by a neighbor's dog in 1992. The disorder causes her symptoms ranging from migraine headaches, to chronic facial pain and vertigo. She has been diagnosed with post traumatic stress disorder from the dog attack, chronic daily headaches and migraines, malocclusion from improper orthodontics, degenerative disc disorder in her neck, and various neuropathies.. all of which were symptoms of a much bigger problem, TMJ disorder.

All of this led Stacy to begin working as a patient advocate. She has been the executive director of the non-profit organization, TMJ Friends since its inception in April 2005. They have about 600 members and are growing every day. Stacy has been blogging since 2004 and recently joined the team on ChronicPainConnection, part of the HealthCentral Network.

What is a patient advocate?

People often ask me what a patient advocate is or what a patient advocate does. Here are a few applicable definitions of the word "Advocate"...

1. One who speaks on behalf of another (en.wikipedia.org/wiki/Advocate)
2. A person who pleads, intercedes, or speaks for another. (www.mdx.ac.uk/www/study/mhhglo.htm)
3. A person, often a family member, who is designated to speak with healthcare providers on behalf of a patient. (www.ohpco.org/health_care_glossary.htm)

The third definition sums it up pretty well. As a patient advocate, I speak on behalf of patients. Advocacy work can take many forms. It can mean talking with a particular health care provider or insurance company on behalf of a particular patient. It can also mean bringing public attention to issues that impact our health. A good example of that is the work I do to educate people to the fact that Migraine is a genetic neurological disesae, not "just a headache."

The dynamics of health care are changing. Patients are becoming more involved, asking more questions, realizing that we are ultimately responsible for our health. Partly due to the Internet, we have more information available to us than ever before, making it easier for us to be educated patients -- able to work with our doctors and take part in the decisions affecting our health and wellbeing.

Somthing else that patient advocates do is teach patients how to be their own advocates; how to know what they can reasonably expect in a relationship with their health care team and how to achieve it.

So, who is a patient advocate? A patient advocate can be someone like me who helps people with problem situations and strives to educate patients, physicians, and the general public on both health issues and communication issues. But, we should all learn how to be patient advocates in our own right when it come to issues involving us or our family.

As this blog develops, you'll find a wide variety of posts. We'll talk about advocacy issues pertaining to particular conditions, general issues, how to advocate for ourselves, and more. I hope you'll return and join me on a regular basis.

Live well,