Well friends this third conference seemed to change the tenor of the meetings on a lot of different levels…

1. Those of us who were on our third go-around have developed a definite familiarity, which seemed to offer more openness and honesty in our discussions
2. We had several new members of the meeting (a significant contingent were directly from our family here).
3. All of the new members were female, which brought a very different tone to the meeting
4. We came to the meeting with a homework assignment (some of you offered me pretty good feedback!)

All in all, I think that these additions offered a very different and productive perspectives.

 

Saturday started out with viewing of a recent webinar by http://www.acromegalyanswerswebinar.com/.  This video was examining Acromegaly insurance issues.  Now these are sponsored by the medical company, but the information is still valuable!

 

In this webinar they discuss insurance issues that US patients will be faced with.

Quick synopsis of the video

1. Your insurance will be covered under one of two areas:
   1. Medical Benefit: Received at and injected at doctor’s office
   2. Pharmacy Benefit: medication comes from a pharmacy (local or specialty)

                                                              i.      Injected either at the doctor’s office or at home

                                                            ii.      If you have issues with your insurance and you take Somatuline, you are eligible to get free patient support for PACE (Patient Access Care & Education), they will happily help. (866-435-5677)

 

1. co-pay issues
2. Prior Authorization issues
3. Medicare issues and reimbursements
4. PACE Pledge Program:

Ø      If your insurance is delaying coverage for any reason, PACE will cover your Somatuline for up to 8 months of coverage

Ø      If you want/need, PACE will call you to remind you: take/order medication

Ø      PACE will follow up with you once you start your medication to see how you are feeling.

 

After the video, we brainstormed on how to get information to physicians.  Ideas included:

1. Focusing on endocrinologists since they see most of our cases
2. Focusing on nurses since they handle a bulk of our medical care in the office
3. Hosting national events for medical professionals to attend
4. Newsletters that acro patients could receive

 

 

Since our last meeting, some of the programs that have taken place which we may have helped to shape:

1. Patient Education Days at two major hospitals
2. Full use of blogging at http://www.acromegalyanswersblog.com/ (includes multiple writers from our family here!)
   1. Individual stories, psychological support, emotional impact of Acromegaly, understanding IGF-1 and GH Levels
3. Two new webinars:
   1. Insurance issues (see above notes)
   2. Disease management (Optimize your Acromegaly Therapy)

 

Medication Issues

We had a discussion based on a question submitted to me for the meeting.  Can a patient build up resistance to the medication?  This question seemed to generate a strong level of interest.  The general consensus amongst the professionals in the field seemed to show that there are no really conclusive long-term studies that show medication loses its efficacy over long-term use.  In fact, the long-term study they did know of was performed in Europe and it showed that the body did not build a tolerance to the medication.  (Mind you, the medications we are talking about are too new to have a great deal of lateral studies). 

 

Suggestions if you feel your medication is not working as well as it used to:

1. The most obvious is talk to your medical expert.  Maybe you need a stronger dose and they can order the test(s) that will say.
2. Examine your life.  Maybe the issue is stress.  Is there something you can try to manage better in your life?
3. Talk with a dietician.  Maybe the foods you are eating are negatively impacting your body
4. Many other possible factors that could impact your IGF-1.
5. Sadly, it could also be issues with your tumor

 

Another patient issue became a kind of impromptu panel discussion.  Can you take a partial dose of your medication?  In a word… NO!  You must take the full dose!  Taking a partial dose can negatively impact your body and the medication being administered.  If the smallest dose is still too large, talk with your physician about extending time between doses… MAKE SURE YOUR MEDICAL PROFESSIONAL ADVISES YOU BEFORE YOU TAKE ACTION!!!

 

 

 

Homework project
This was a kind of curious assignment when we all got our boxes mere days before we were scheduled to meet.  The assignment was simple.  Think back to when you were initially diagnosed.  What information would have been most helpful to you?  We received scratch pads, markers, colored paper, and encouragement to go as crazy as we could!  Some people really went the whole nine yards.  Some people focused more on the information that would be helpful.  What I want to do here is list what people put on their lists.  Maybe you will see information you have not been exposed to yet, or you forgot about resources that you could tap now.  Some things were repeated (sometimes more than once.  I am going to list it all anyway so you can see what is most important to patients.

 

Mind you, I ask that if you give feedback on the information provided, it is all positive.  Just because you may or may not agree with a patient, it could be helpful for other people!  That is the beauty of our panel.  Our diversity means diverse perspectives!

Patient 1

Ø      Contact page for patient

Ø      What is Acromegaly?  With room for patient to write notes

Ø      http://www.cartoonstock.com/lowres/dcr0068l.jpg

Ø      Symptom checklist

Ø      Diagnosis and Treatment information

o       Suggestions for a treatment team of specialists (endo, dentist, psychologist, etc.)

o       Area to insert contact information for your treatment team

Ø      Bullet points to discuss with your doctor

Ø      Treatment options

o       Drugs and potential side effects

o       Surgical options

o       Lab results spreadsheet so patients can track

Ø      Pocket folders so you can hold onto crucial papers

Ø      Resources (on and offline) with room for patients to add their own

Ø      Journal page space

 

Patient 2

Ø      Definition of Acro

Ø      Health guides/key articles

Ø      Treatment articles

o       Dr. Jho  http://www.drjho.com/

Ø      Case studies for patients to read (and use as inspiration/guidelines)

Ø      A checklist for doctors to follow and patients to remember to discuss with their doctors

Ø      Support networks

o       Family

o       Religion

o       Daily Strength

o       Acromegalybloggers.blogspot.com

o       AcromegalyCommunity.com

Ø      Books

o       A New Earth (Eckart Tolke)

o       Art of Happiness (Dalai Lama)

o       Change Your Thoughts- Change Your Life (Dr. Wayne Dwyer)

o       Book of the Way (Tao Te Ching)

Ø      Medical Contact

Ø      Reminder: Don’t let Acro define you

Ø      Suggestions for after surgery.  Don’t just walk out of the hospital with no preparation

 

Patient 3

Ø      Poster set of Endocrine system

Ø      What does acro look like? http://www.acromegalysupport.org/images/education/acro_img4.jpg

Ø      Educational information

 

Patient 4

This patient focused on two parts to the project:  What are the issues a new patient is faced with?  and What should be in the patient kit?

 

Issues:

Ø      Fear of mortality (is this cancer?  Will I get it?  How is it different?)

Ø      Loneliness (not knowing anyone else with disease or how to find them)

Ø      Feeling of being overwhelmed

Ø      What treatment options are there?

Ø      What patient services are available?

Ø      What happens in the treatment continuum?

Ø      Where do I find my best options for treatment services?

Ø      How do I get support for my friends and family?

Ø      What about insurance?

Ø      What about my side effects?  Will they go away?

 

Kit:

Ø      Model after the Walgreens Patient Passport…

Ø      Patient needs to own his/her treatment and recovery

Ø      Sleeves to hold medical receipts, medical referrals, and essential paperwork

Ø      Area for medical specialists (GP, Endo, Neuro(s), psych, Nurse Practitioner/Physician Assistant) and patients to write notes

Ø      Support networks on and offline

o       Ask medical specialists of local support they know about

o       Internet:

§         AcromegalyBloggers.Blogspot.com

§         AcromegalyCommunity.com

§         Hormones411.com

§         mAssKickers.com

§         Websites should be free since new patients already feel as if they are being financially harangued at every turn

Ø      Area to fill in name/address info on recommended specialists in local area

Ø      Insurance information and

Ø      Contact info for insurance people (at work and at the actual insurance co.)

 

Kit should:

Ø      Be easy to understand

Ø      Be pithy- don’t get too medical when patients are new to the process

Ø      Be warm and supportive

Ø      Offer directions for more educated patients to pursue more information

 

Patient 5

Ø      What is acro?

Ø      Glossary of key terms

Ø      Photos of patients

Ø      Signs/Symptoms checklist

Ø      Treatment option goals

Ø      Medical options

o       Surgery

o       Meds

o       Radiation

§         Include essential articles

§          Mary Lee Vance: http://www.cushings-help.com/pituitary_tumor.htm  (Use this to create a question list for your doctor)

Ø      What is the cost of treatment from the first symptom forward?

Ø      Medical guidelines for clinical practice: http://www.ous.edu/state_board/workgroups/aeed/campusvisits/SOU_Cost%20of%20Medical%20Care.pdf

 

Patient 6

Ø      What is acro?

Ø      What are the symptoms and their significane

o       IGF (safe ranges, what does it mean)

o       Sweating

o       Exhaustion

o       Etc.

Ø      Understanding signs/symptoms

Ø      GH/IGF-1:  What does it mean to me?

Ø      Coping with the disease

Ø      Accepting diagnosis:

o       How to deal with it

o       Dealing with symptoms and issues

o       Moving forward

o       Find a buddy you can rely on for support

Ø      Being in control of your situation

Ø      Building a good relationship with your key health care players

Ø      A place to keep a diary of your symptoms

Ø      Reaffirmation to keep your medical appointments

Ø      Keep positive

Ø      Open communication, especially with your essential healthcare workers (there are several potentially ‘embarrassing’ side effects of this disease.  It is important that you are honest so you can get help!

Ø      Verbalize concerns (same reason as above)

Ø      Discussing your issues with your employer (so they can be understanding when symptoms are acting up instead of trudging through or getting a bad rep)

***Be wary if you are going to do this… first go to your HR Rep (off the record if possible) to make sure your job is safe.  While in most situations, it is illegal to fire a person for healthcare reasons, you want to make sure your business will not ‘find’ reasons to discharge you.

 

Patient 7

***This patient curtailed as much as possible on issues that had already been repeated multiple times

Ø      Knowledge is power.  You need to educate yourself

Ø      What are the pituitary treatment options

Ø      How will Acromegaly impact your life now and in the future?

Ø      This disease is treatable and you must act as such!

Ø      Acro: Vocab and Visuals

Ø      Information on getting a Living Will and other essential documents as you enter the medical process

Ø      Area to keep track of your medical records

Ø      Help with talking to your friends and family

Ø      Documents you can take home to read and reread… and share with friends and family

Ø      Suggestions to start receiving mental health treatment RIGHT FROM DAY ONE!

Ø      Journal space so patients can keep track of their thoughts and feelings

Ø      Goal chart:  Where do you want to be in (6 months, one year, 3 years, 5 years)

Ø      Tips on asking for help from those most important to you when you feel overwhelmed

Ø      Warnings of medications that could mask symptoms

Ø      Caregiver handout.  What those most important to you need to know (and how to best help the patient you love)

Ø      Treatment options

Ø      Medical suggestions and life goals (Example: Do you want to have children?  Make sure you tell your medical specialist so that treatment does not interfere with your life goals)

Ø      Resource guide for parents and young children to ease communication (and help the child to understand)

Ø      Reinforcement that positive attitude changes everything

Ø      Body Image acceptance

Ø      Words to use to help with communication

Ø      Patient stories (other patients thought this was an especially good idea since hopefully other patients would find stories they could relate with)

 

 

Themes of Patient Feedback and Noteworthy ideas  this was drawn from both the pre-made presentations and panel discussion

Ø      Contact information is important for patients:

o       Psych

o       Primary care providers

o       Nutritionists

Ø      Pre and post surgical information and support:  The treatment continuum

Ø      Diagrams of what is acro?

Ø      Informative and vivid posters/pictures

Ø      Focus on emotional aspects of acro

o       Books

o       Motivational messages

Ø      Treatment options and information

Ø      Lab results and what they mean

Ø      Journal space that patient and/or medical professionals can add to

Ø      Online/offline resources

Ø      Pockets for storing crucial papers

Ø      Insurance information and support

Ø      Understanding signs/symptoms of acro

Ø      Reinforcement of the importance of being in control of your own healthcare\

 

Over the course of the weekend we met with people from the Magic Foundation.  (http://www.magicfoundation.org)  I was overwhelmingly impressed with Mary and her daughter and the efforts they are looking to accomplish.  This is an organization dedicated to patients dealing with Growth Hormone and pituitary issues.  They are working on adding a specific representation for Acromegaly patients.  If you sign up to join their organization, they are VERY respectful of patient/member privacy.  Not only does this organization offer support for patients when they need it, they also work as an advocate for patients in the business and political community.  I am proud to say that AcromegalyCommunity.com will proudly promote the Magic Foundation and I hope that you find their support a welcome addition to our growing support network.

 

One of the discussions that took place this weekend is a question of what would motivate people to try a new medication.  The list included:

Ø      Discount coupons

Ø      Trial offers

Ø      Free dose after five refills

Ø      Co-pay assistance

Ø      Patient assistance (discounts for patients with insurance issues)

Ø      Cumulative offers

Ø      Rebates

Ø      Bridge discounts (free meds until insurance issues are resolved)

Ø      Co-pay coupons

 

Next discussion was asking what should a patient care liaison offer for the patients?  Several of our participating patients already work with Somatuline’s PACE Plan (Patient Access, Care and Education).  Services should/do include:

Ø      The company will send a nurse to train you in how to self-inject your shot if you wish

Ø      Insurance support (including coordinating between your doctor’s office and the insurance company)

Ø      Educational material

Ø      Work with your specialty pharmacy (or local pharmacy) to get the meds you need

Ø      Benefits investigation as necessary

Ø      Monthly shot/refill reminders

Ø      If you are not insured, they will help you apply for the free drug for a year.  After a year they will help you reapply next year

 

 

 

One last thing I want to bring up.  I was having a private discussion with a few key leadership members of our panel about the next level of AcromegalyCommunity.com.  We have a book in the works, so there will be at least a very small store on the website.  One thing that is VERY IMPORTANT to me is that we keep this family of ours as pure as possible.  So I want to get feedback from you before I do anything at all.  All feedback will be valued and will help to steer my decision…

 

The recommendation was that we offer a second level of membership.  First and most importantly, everything on the website will still be 100% free… We were discussing doing a membership of like $20-$30/year.  This would help to defray costs for running the site.  If any ‘profits’ were realized, it would strictly go to patient support.  With this you would receive a quarterly newsletter and _____.  So my question is what do people think?… and please, fill my email box!  If you think it’s a good idea, tell me what you would want to see included!  If you think it stinks, tell me!  If there are items you would like to see available, tell me!  This is a different level I never really envisioned, but if there is interest, I want to meet your desires!

 

Also, if you would be interested in a newsletter, and you are interested in writing, please tell me!  If we are to pull this off, support will be crucial!

 

 

 

So please share your ideas.  Wayne@acromegalycommunity.com

 

 

 

I hope that this review was helpful to all.

 

As always, I wish you good health and happiness.