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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
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