Articles tagged with: wayne brown

A Public Stoning or A Milestone Birthday

on Monday, September 24, 2012. Posted in Blog

By Wayne Brown

Birthdays are a funny thing.  From our youngest days, we know it is the one day of the year where we are guaranteed to be the star of the day.  In spite of this, or maybe because of it, people have very strong feelings about that day.  When we are young, and our parents are throwing the party, and our day is filled with balloons, cake, friends, family, and scads of presents; we think the day is our own personal national holiday, and we have another million of them to come.  But then we go and screw things up by getting older.

If you are like me, and you suffered the loss of a family member at an overly young age, while birthdays are cause for celebration, they can also be somewhat like a countdown.  I lost my father when he was 50 years old, and I was only 22.  Since that day, 50 is the big number that I see hanging over my head, much bigger and brighter now, as my 40th approaches this Sunday.  Birthdays are a mile-marker for many of us; a time for self-reflection or mental inventory of dreams and goals accomplished, anticipating, or changing.  One of my friends who just turned 31 was listing all the things he thought he would have had by 30, that still evaded him, mainly, wife and kids.  I was empathetic because I had that same feeling when I was turning 31.  I know, for some ladies it may be strange to hear that some guys have that on our checklist, but some of us actually do.

47904_10151264911151617_2123846082_nWe all have a checklist, a bucket list, a dreams list, or whatever you choose to call it; some list that may or may not be written down.  A list of dreams you wish to accomplish in your lifetime.  Making checkmarks on the list are very cool and offer a feeling of accomplishment and pride, but as the candles stack up, and the cake gets brighter, the light from those candles can seem to merely spotlight the unchecked items you most hoped to cross off the list.

I am extremely fortunate that many of my major items have been checked, or will be soon:  live overseas, write a book, and teach were some of my big check-offs.  All those have been accomplished, much to my pride and satisfaction.  Now I would like to write book two.  Adding items to the list is a necessary thing- it’s a showing that you have plans to be around for a while, and that you are making positive momentum.  If your entire list is checked off when you are 25, you need to dream harder, and expand the list!

Soon I will be checking off the goal of being married.  While I am doing it later than expected, the wait was worth it; and I am marrying my perfect woman- so it was worth the wait.  Now, when or whether we have a family, only time will tell, but if it does happen, it’s another checkmark, meaning I have two spaces waiting to be filled in with new life goals.

I have a bunch of other items on my checklist, but that is not necessarily the focus of this piece.  In my life, I have outlived multiple near-death experiences, a fairly harrowing accomplishment when you are still in your fourth decade of life.  One of the most traumatic things I have lived through, I did publicly; and surprisingly, I do not consider it to be one of my near-death experiences.  Being diagnosed with a (near) brain tumor when I was 32 changed my life perspective, and I would argue actually restored my freedom to live.  Before that, I was slowly being killed by this tumor, and I didn’t even know it.

Within days of starting medication, I felt like a new man, and every day was a little better.   Surgery would come six month later, and I knew almost right after I woke up that my life was mine to live now--- however I chose!  I could live it as a patient with a tumor or as a person who is living their life as freely as they wish, who happens to have a medical history.  It’s a difficult crossroads, and not everyone with medical challenges gets the chance to make this decision.  I did have that choice, and I chose the latter.  Like so many choices in life, it is the more difficult and more rewarding choice.

Since my surgery, recovery, fallback, readjustment, and stability, I have had several birthdays pass.  The next major milestone is mere hours away… Last year, when 39 hit, I was somewhat melancholy but accepting of it, inventorying all I had not yet checked off from my list yet.  While I had dated before, I never even came close to getting it right, and now 40 is on the way.  Oh well… I guess, if I am meant to spend my entire life single, I will make my life as amazing as possible.

Thirty-nine has been a fun year.  I guess it goes to the theory that there is no freer a man than one who has nothing to lose.  I am sure that this new attitude played no small part in readying myself to find the love of my life.  But even if I hadn’t… even if it was still me and the pups at home…  I had carved quite a great life for myself.  I had amazing family and friends who I loved, and they felt the same about me, I had created a cause for support that I turned into a charity that was helping people the world over, and I had a routine I enjoyed where I could still escape it all in my home, where my sanctuary was.

Now 40 is about to be in the rear-view before I know it.  The theme of the party, you ask?  “It’s the end… of his 30’s.”  Some fiancé, I know…  What can I say; her sense of humor is corrupted, broken, and just like mine!  She came up with this theme on one of our first dates, and so far everyone has thought it’s brilliant!

Seemingly hours after my 40th, I will be married.  What happens from there, I don’t know.  I bet you are thinking that now that I am in wedded bliss, I have shaken my birthday phobias.  Oh, au contraire.  Phobias are not necessarily rational fears, and a new piece of jewelry will not conquer them; but maybe I understand this one better.  Now that I will be married, the fear is even stronger, and the stakes are even higher.  When it was just me, if I died tomorrow, who would care, really?  Sure, my family and friends would miss me, someone would need to take over management of the charity, and someone would need to take care of the dogs.  As soon as all that has settled down, I felt like my life was effectively settled.  All paid up, no IOU’s.  Now that I am to be married, I have someone else to worry about!  Oh man!!!

This reality of responsibility was smacked over my head mere weeks ago, when my cousin, of only 43 years, was taken from the earth thanks to a massive heart attack.  No warnings.  No bright lights.  No sirens flashing.  He was there in the morning taking care of his wife and kids, went to work, laughed and joked with his friends, maybe had a light lunch, and by dinnertime, his wife was a widow and his kids lost their dad.  It is, to say the least, earth-shattering.

Now, I am not switching places with my parents or my cousin, but I think that it was cause for alert in me.  I needed to take inventory of my world/birthday view.  I needed to stop with the, if I go tomorrow, my life can be swept away with a little paperwork and some Kleenex.  I don’t know if I am going tomorrow, or in a hundred years, but I am going to seize every day.

cake457That said, if you think I am not watching the clock for my 44th birthday, and then my 51st birthday, you need to take off the rose-colored glasses, or at least tilt them a smidge.  My fiancé embraces every birthday as a huge party, and I adore her for that.  It reminds me of growing up with my dad, who used to celebrate “birthday month.” After he was gone, I just didn’t care as much about the day.  Sorry, I just didn’t.  It wasn’t the same.  And honestly, it wasn’t until my fiancé got so excited about her birthday that I really drew the connection in what made me change so much.  I kept asking her why she was so excited, and her answers were so simple, of being with friends, enjoying another year, and of course delicious cake!  Hmmm… Maybe I needed to take a longer look at this birthday thing, focusing on the excitement, rather than anticipating what birthday party I would not be attending.

We were talking this past weekend about upcoming birthdays, we were joking about the 40th, and naturally for me, 50 was on my mind.  As the conversation wound that way, my eyes got a little wet.  I said that to me, the 51st was far more important than 50, so she asked the logical question: should the big party be 51 instead of 50?  I said no.  Let’s make 50 a bash, so we can enjoy it.  She smiled and said that was fine, and that 51 would be a fantastic birthday with family around.  I smiled and agreed.

Dreading a milestone birthday isn’t a negative connotation, as far as I am concerned.  Yes, it is just a number, but we only get a certain amount of those numbers, and I am really enjoying the ride, so why would I want to get off?  Have you ever been to a great show where, at intermission, you are raving about what a great show it is and how you want to see the show go on and on?  Some of us are blessed and cursed with a hyper-awareness of mortality.  We are not more or less emotionally healthy than you are, and you needn’t feel the compulsion to correct us.  I love my life, and I hope I live for another hundred years.  That said, I know it is fairly unlikely.

I would love to have a family, and watch my great-great-grandchildren get married.  Fairly unlikely, but we will see what medical technology has in its future.  This skepticism doesn’t mean I am fatalistic or unhappy, quite the contrary.  I love my life and wouldn’t trade it with anyone at all.  All it means is that I have a greater awareness of lifespan than you might, at least at this point right now.  And we are both right, for how it works best for us.  Please don’t try to force my eyes closed, and I will not try to pry your lids open.  We both know what is there, and both of us have our own systems for managing it.

Whatever happens happens, and obviously we have no control over it.  That said, I am still going to keep one eye on the clock… at least until I break the ceiling of my 51st birthday.  If you understand all of this and it makes sense to you, you are welcome to come to the party.  If you want to fight me on whether I am right for feeling the way I do, I am eating your slice of cake!

Patient Care as a Collaborative Process: Employing Nontraditional Experts Offers Sympathetic Perspectives on Patient Support

on Thursday, February 16, 2012. Posted in Blog

All the world's a stage,

And all the men and women merely players

-William Shakespeare



Originally published in Global Forum, February, 2012 (Vol. 4, Issue 1).  Reprinted with permission from Drug Information Association.  For more information, please go to


Wayne Brown

            Choosing to work in the medical industry today, now more than ever, requires knowledge of multiple disciplines. You probably went into your chosen profession because you had an aptitude for science and a desire to help others; but today, with ever-increasing government regulations, and the omnipresent fear of litigation, the industry of medicine has been forever altered.  The good news is that there is assistance out there, if you are willing to accept the help. 

While a patient advocate can be a parent, friend, or loved one, there is a growing population of professional patient advocates, and our role is starting to be recognized throughout the medical society as a viable option for patients in need of support from others who have a true inside understanding of the physical and emotional aspects of a medical condition.

Realistically, there are too many aspects of the medical field to rationally expect anyone to service all facets. If practitioners could focus more on their strengths without feeling compelled to do everything, everyone would benefit.  One of the easiest ways to offer real and compassionate support for your patients, especially those diagnosed with a rare disease, is to introduce them to a professional patient advocate. The best part: You won’t be violating any privilege by simply handing them a phone number or website and letting them make the choice for themselves.

While I am a patient advocate today, this was more of an arrival point than a destination; but as life kept forcing me down the medical path, I grew well-acquainted with the view from the extra chair in the exam room.  As a teen, I watched my mom struggle for years, waiting to finally be diagnosed with Sarcoidosis because at the time, she didn’t seem to fit the profile.  In my 20’s, I was the primary caretaker for my father as he battled brain cancer that had mutated into eight distinct cancers. Then in my 30’s, I was diagnosed with Acromegaly. Each experience provided its own type of confusion and frustration, while simultaneously increasing my drive and passion for a quality life both inside and outside the medical campus. 

As an advocate, having founded Acromegaly Community, Inc. (, I have a different, but broad view of medicine today.  Our organization started small.  Frankly, it didn’t even start as an organization, but as a collection of patients on Myspace. Dedication and perseverance can make a difference.

In the past seven-plus years, I have had the opportunity to work with a number of different people in the industry of medicine: Medical professionals in private practice and in university-based facilities, pharmaceutical reps and executives, health insurance experts, and lots of wonderful patients and their loved ones just trying to cope with life from across the globe. 

One observation that seems to be hiding in plain sight is that there are three distinct factions of medicine that have developed and, generally speaking, there seems to be a lack of trust, which inhibits more cooperative work and long-term patient support between medical professionals, the pharmaceutical industry, and patients. The biggest divide is between patients and their practitioners.  It is astounding how much time is spent as an advocate trying to get patients to be more trusting of the medical community.

            When I started out in 2004, my sole motivation in creating that Myspace group was to find other Acromegaly patients to talk with.  While medical professionals have textbooks, rare diseases are not always textbook-friendly – new information is being uncovered almost daily and patients often believe that their personal stories seem to be of no great interest to their practitioners.  The truth is that realities are what they are, and medical professionals have to accomplish so much in a day that it is difficult to budget hundreds of patient stories into an already overly filled day.  More than that, what can a practitioner do for a patient who complains about loneliness as a symptom when privacy laws for medical professionals are quite clear?         

            The three medical, pharmaceutical, and patient camps could work far better for everyone’s benefit if the relationship was symbiotic, rather than antagonistic, by using the Patient Advocate as your bridge.  Not every condition has a patient advocacy group, but a little research can help you find options. currently lists 165 advocacy groups, and adds new groups all the time. 


The advantages of working with patient advocacy groups are multifold:

1.    We are singularly focused.  In medicine and pharmaceuticals, you may deal with dozens or even hundreds of issues per day.  Patient advocates have their niche, and that is their focus.

2.    Patient Advocates are not bound by strict confidentiality laws.  While a good advocacy group is rigidly respectful of privacy, we can more easily facilitate introductions between patients. 

a.     A 30-something patient who wants to get pregnant and has questions about what it’s like can learn a lot from other patients.  If they ask for a connection, we can reach out to female patients and facilitate a partnership without compliance fears. 

b.    We have the time to be sounding boards or unifiers for patients and their loved ones, who may be frustrated or confused. 

c.     It’s not just about comparing notes.  While “me too” may never reach the physicians’ desk reference guide, there is a clearly cathartic benefit built in when people join our website,  Many patients and loved ones have learned a tremendous amount simply because the group can pool their knowledge resources. One example: There are limited medications for Acromegaly patients, and the injectable meds can be painful. One patient was prescribed a topical anesthetic to be administered 30 minutes before injection, and that information was shared with the group, to the benefit of many patients. 

d.    Medical professionals who are willing to support and promote advocacy groups generally find that their patients appreciate it, and it can actually save them time because the patient is far more aware of their disease.

3.    Patients who belong to Advocacy Groups are eager to be heard.  Patients and loved ones dealing with the effects of a rare or extremely rare disease generally have very distinct opinions on healthcare, pharmaceutical options, and the state of medicine today, and they want to be heard.  The problem is that most of these patients and loved ones are frequently left screaming into an abandoned forest or preaching to the converted, neither of which furthers patient care or medical research.  Patients know what they are looking for, and the pharmaceutical professionals who are willing to hear them generally find themselves in a direct pipeline of inside knowledge.


            What makes a good patient advocacy group?  There are a lot of different advocates in the marketplace, and just as with any field, there are those who are in it for the right reasons, and those who are in it for other reasons.  This is tricky because every organization has to work within its own parameters. 


Let this serve as a suggested guideline:


1.    Patient privacy is ferociously protected.  As mentioned earlier, unlike medical professionals, advocates do not need licenses to practice, and we don’t answer to the FDA like pharma.  While this frees us in many ways, these freedoms must be used wisely.  Many patients do not want to think about their disease all the time, so the level of activity ranges greatly in our group, which is encouraged.  Our website members are encouraged to share as much or as little as they wish.  If a patient does not wish to share their photos, email, Instant Messaging, and cell phone number, our organization does not have the right to violate that trust.  Any time there is a mentorship opportunity, we always ask before sharing information – even if the patient always says its okay.  You don’t know what that patient’s life is like today.  Respect privacy at all costs.

2.    Support is available to all, regardless of income.  Of course, all organizations have operating expenses.  But patients also have bills to pay.  And if they can’t work due to their medical circumstances, they are probably having insurance issues too.  Why scare patients in need by charging to walk through the door?  Even if the organization is willing to waive fees due to hardship, those in need will simply feel unwelcome and no one at the organization will ever know a need went unmet.  Offering enhanced products and services like journals and tee shirts to help raise revenue makes sense.  Working with businesses that help charities to generate revenue is also logical.  We work with to run our website, and they have been extremely generous with their support of the charity and our need to control costs.  We also work with to help with direct fundraising like walkathons, donated birthdays, and the like.  Fundraising must be creative because membership to our website is always free.  The logic is simple: If we charge a membership fee that will help with expenses, certain members won’t be able to afford support, and if we charge a small enough admission to be affordable to everyone, why bother?  If it keeps one person out, then it’s not worth it.  Tangible support should not be a premium service.  Now, this is obviously easier when corporations offer charitable support, which gets back to the team mentality of patient care.

3.    All experts are welcome, even (or especially) when they compete in the same industry.  Of course, not every business, hospital, or doctors’ office is going to choose to work with advocates, but they need to feel welcome when they are ready.  That said, the professionals cannot have unfettered access to patients and loved ones.  You don’t want your membership feeling as if they are nothing more than lab rats. But when studies are solicited, the pharma and medical camps both feel as if patients are eager to help out; after all, it is to their benefit to help advance science.  And when the medical camp chooses to host an event, they know that the Advocacy Group will cooperate and aid in promoting the event.


      The key to building a cohesive patient advocacy TEAM is that all members work as one with one key focus: Patient support.  Help the patient and their loved ones live the best lives they can.  The payoff will be huge for everyone.  The medical community will have patients who are educated consumers and therefore more proactive in their own healthcare. Pharma will more easily build brand loyalty by more easily meeting patient needs and desires. And patients will be less likely to feel totally deserted in the process of managing their own healthcare, which means the whole family network will probably feel less overwhelmed.  Everyone wins.

     As a patient advocate, our organization has always worked to support all other patient advocacy groups, pharma, and medical.  Advocacy is not a competition.  It is very common for us to field questions and concerns from around the world, even from other Acromegaly-focused groups.  Different groups offer different ideas and what may work.  Our organization works with all sorts of different support and advocacy groups, some medical, some not.  We all share ideas and feedback.  All this can do is improve support for the people most in need, so we all can win.

      In June 2012, Acromegaly Community will be hosting our second annual convention in Las Vegas, NV.  The goal of this convention is to bring together patients, medical, and pharma, to provide all attendees with information and support.  We showed in 2011 that informational weekends can be supportive, fun, and educational.  Please consider this your formal invitation to attend in 2012.  If you are so inclined, sponsorship opportunities also still exist.  Our weekends are geared so that patients and loved ones, and medical and pharmaceutical professionals, all walk out more knowledgeable, and more unified as a team.  We would love to have you on our team.



Wayne Brown is the founder of Acromegaly Community, a group focused on patient advocacy, and was the lead writer for the collaborative book Alone In My Universe: Struggling with an Orphan Disease in an Unsympathetic Universe.  He can be reached at This e-mail address is being protected from spambots. You need JavaScript enabled to view it m


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