Hamilton Regional Multiple Myeloma Support Group
Hamilton, Ontario, Canada


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Minutes – March 14, 2009

Hamilton and District MM Support Group

 

Speakers: Ryan Clark- Advocating for Access

                  Janet Jacks- Goodness Me

 

NEURAGEN

  • Recommended for Neuropathy
  • Expensive -$30.00 for a small amount but it does work very well
  • Effects last from 1-8 hours
  • Available at Goodness Me
  • This week in the “Mountain News” there is a $5.00 off coupon- good until September 31st 2009

 

As a point of interest some cancer drugs may push the limit on any existing drug plan you may have, check to make sure all your drugs are covered.

 

MM Canada had launched a new campaign of awareness, it is Canada wide. Titled “Time to Live”, they are trying to get Dianna Crawl involved as her mom passed from MM. The campaign began in February of 2009, so keep your eyes open for any advertisements.

 

Petition

·        On line- Myeloma Canada

·        Advocating for the coverage of REVLAMID

·        Get gamily, friends, anyone to sign

·        Return it to Lori

 

Lori introduced Ryan Clark of Advocacy Solutions

 

Advocating for Access

  • Teaches people how to be advocates on their own behalf
  • Specifically for REVLAMID
  • Challenges to get new meds continue to mount
  • Series of documents on MM Canada website to aid in advocacy

 

Advocacy/Developing Effective Plans

Drug Approval

What you can do

 

What is Advocacy

  • Verbal support
  • Argument for a cause
  • A process that takes time to see tangible results
  • Sound, reasonable, rational arguments
  • Empowerment- exerting control around a specific issue

 

AWARENESS, EDUCATION AND ADVOCACY- there is a difference

Cornerstone piece to advocacy is your personal story

 

Important

  • Because the squeaky wheel gets the grease
  • If you do something- anything, there may be change
  • Canadians are very good at complaining
  • The only thing to bring about change is action

 

Process

  • Key message development
  • Development of your tools
  • Development of your one “ask”

 

Identification

  • Government required to deal with many issues every day
  • Must compact core elements
  • Separate fact from fiction
  • Consensus on the issue that you want to bring forward is required

 

Framing

  • The key message must tell a self contained story
  • Each key message should be 25 words or less
  • Must always be clear, compelling, consistent

 

Tools

As a process, 3 steps must be followed regardless of the tool being utilized to get to advocacy stage. EDUCATE, DEMONSTRATE, ADVOCATE

 

Your One “Ask”

  • Objective or goal
  • One-what you need not what you want
  • Choices must be made
  • One “ask” must be tangible, real

 

Drug Approval Process

  • Public drug formularies impacted by Federal, Provincial and National policies
  • Manufacturer submits to Health Canada
  • Patented Meds Prices Review Board (PMPRB) regulates dollars
  • (CED) Common Drug Review- reviews new prescriptions
  • (JODR) Joint Oncology Drug Review
  • Provinces also review prescriptions and make reimbursement decisions
  • Submissions go to Therapeutic Products Directorate of Health Canada
  • Reviewed for safety, efficiency, and quality
  • Notice of Compliance (NOC) is issued
  • Average approval time is 18 months

 

Pricing

  • Regulated prices- PMPRB for patented or brand name drugs
  • Private drug plans
  • Public drug plans
  • Mandate PMPRB to make sure the cost is not excessive

 

Joint Oncology Drug Review

  • Ontario Run
  • Cancer drugs – oral or IV
  • Purpose- recommended whether or not to publically reimburse meds
  • Goal- to have a national approach for reducing duplication of efforts
  • Goal- to maximize the available expertise and resources across the country

 

Listing

  • Province and Territory – have the final word, yes or no, public funding
  • 19 public drug plans- each had its own eligibility criteria, each with their own review and decision making process
  • Dollars spent in Ontario in 2006, 1 billion on Cardio Vascular vs. 200 million on Cancer

 

What You Can Do

  • Find out more about how decisions are made in Ontario
  • Meet with local reps
  • Learn more from MM Canada
  • Review advocacy guides and learn how to engage

 

What You Can Do In Ontario

  • Advocacy program for REVLAMID in Ontario
  • www.mmcanada.ca –awareness and advocacy section
  • Comprehensive materials designed to help people advocate to the government officials through meetings and letters
  • Make your voice heard regarding reimbursement for REVLAMID using these resources

 

 

Lori thanked Ryan for speaking and introduced Janet Jacks of Goodness Me

 

 

Janet Jacks- Goodness Me

 

Food

  • Maximize its benefits
  • Validation of natural meds in dealing with cancer
  • Create an environment that is unfriendly to cancer- where it cannot thrive
  • Enlist the help of Naturopaths
  • Attitude very helpful
  • Simple/healthy foods make a list of these foods that are liked
  • Supplements can be used as well
  • Oatmeal, onions, squash, carrots, sardines
  • Food in its most natural way
  • Remove anything that pushed us downward –damaged fats –refined foods

 

Identifying real food- what was available 200 years ago, prior to manufacturing

  • Whole grains
  • Vegetables- eat more of them more often
  • Get past “why me” and move on to “what now”
  • Be pro active
  • Find more ways to eat more vegetables
  • Soup, salad, stir fry
  • Use spices so dishes are not boring
  • Darker colours are better
  • We can live without fruit
  • We cannot live without vegetables

 

Fats

  • Do not be fat free
  • Fats are extremely important to cells, immune systems, eye sight
  • Any processed, refined fat are bad
  • Olive oil – very good – EVOO
  • Some ways of extracting fat makes good fats bad
  • Seeds and nuts – fresh, whole, raw
  • Fish- cold water – fatty
  • Not fish from farms
  • Sardines packed in water – from Scotland or Canada
  • Fresh butter, coconut oil does not spoil with heat – good for us
  • Flaxseed – ground
  • Hempseed- add to salad
  • Canola oil – refined- therefore not so good
  • Goodness me offers cooking classes that show you what fats to use and how
  • EV coconut oil and ghee “Coconut Butter Ghee” very good, can’t use for high heat cooking

 

Protein

  • Great for cells
  • As clean a source as possible
  • Salmon – “wild” – a good source- Rain Coast – very high standards
  • Soft boiled eggs or poached – excellent
  • Best not to scramble eggs
  • Hard boil or hard cook is also good
  • Protein powders – provide a serving
  • Legumes – kidney beans, split peas, lentils, navy beans, cannoli beans, great northern beans
  • If a bean give you gas – try another type that is easier to digest and works for you
  • Tips for cooking- soak for 12 hours and throw out soaking water one company does this –EDEN- for easier digestion

 

Grains

  • Refined grained are bad – bagels, pretzels
  • Whole grains are excellent
  • Whole kernel- barley or rye, steel cut oats, brown or wild rice
  • Soak them all day or over night to make them more digestible
  • Crock pots are an excellent tool for cooking grains

 

Cancer is inflammatory

  • For an anti inflammatory diet, we should not eat wheat
  • Cannot digest it very well
  • Cancer patients should not eat wheat
  • Use whole grains and mostly kernels
  • Try it for 1 month- see if there is a difference

 

Spices and Herbs

  • Curry – detoxifies
  • Ginger- detoxifies
  • Tumeric- detoxifies and anti inflammatory
  • Rose Mary – helps live to detox
  • Cinnamon – controls blood sugar

 

Teas

  • Anti oxidants
  • Ginger- good for stomach and anti oxidant
  • Licorice – good for stress and anti oxidant
  • Lemon – fresh organic – cleanses liver
  • Honey and steevia – natural sweetness

 

How we take car of and prepare food can enhance or diminish goodness depending on how properly we handle it.

 

“Cooking with food that fight cancer”

Authors

Richard Beliveau PH.D

Denis Gingras PH.D

Available next month at Goodness Me

 

Cooking Classes

 

10 weeks- $15.00 per week

6:30- 8:00 pm

1:00- 2:30 pm

At Goodness Me

 

  • Cooking classes are excellent
  • They fill up very fast
  • Very informative and fun
  • Lots of recipes and snacks
  • You will be fed
  • Binder of handouts and some free products
  • You can “make up” a missed class
  • www.goodnessme.ca – go to calendar for start dates

 

Breathing

  • The way we breathe can affect stress
  • Shallow breathing makes stress
  • Breathe deep down to help sleep and PH
  • Sit up straight or lie down
  • Try to be aware of your breath

 

PH

  • A measure of your acid and alkaline
  • Measure for 3 days
  • www.PASCOECANADA.com
  • A graph with a white band – a good PH should fall within the band
  • If PH is off you can breath slower – relax
  • Eat more vegetables
  • Drink more water
  • Add minerals

 

Lifestyle

  • Sleep when you feel sleepy
  • When tired – you make melatonin, you should sleep
  • Breathing will help to turn off Cortisol 
  • You will sap tomorrows energy without enough sleep

 

Attitude

  • Address but don’t dwell on the negative
  • Focus on the good
  • Hurts- lack of forgiveness hurts you – stress you need to let go of

 

Pick from a smorgasbord of options to move to a higher level of good health.

 

 

Lori thanked Janet and reminded us of the next meeting

Next Meeting: Saturday, May 9, 2009

Speaker: Laura Mishko

Topic: Dealing with Cancer