Advocacy & Migraine – Webinar

0:00 welcome and thank you uh for joining me
0:02 this evening
0:04 my name is wendy gerhart and i am the
0:06 executive director
0:07 of migraine canada and i’m really
0:09 privileged to be representing the
0:11 community on a daily basis so for the
0:14 next 25 or so minutes i’m gonna go
0:17 through
0:19 several slides and my slide deck did
0:21 grow so i’m gonna i might go through and
0:23 i might skip a few questions but we’re
0:25 going to be discussing about the who
0:26 what why when how of advocacy and then
0:30 talk a little bit about what
0:32 um reimbursement looks like
0:34 in canada for migraine um products or
0:38 our treatments
0:39 and then we can move into a q a
0:42 we are recording this webinar so it will
0:44 be available on our website later this
0:46 week or early next week
0:48 and again just enter your questions into
0:50 the q a um and i’ll try to monitor those
0:54 as we go if i can and if not we’ll just
0:57 get to them at the end of the um
0:59 at the end of the webinar
1:02 and i’m trying to advance my slides and
1:05 not working okay so really really
1:08 quickly i just want to go through who my
1:10 green canada is so we’re a national
1:12 organization with the sole purpose to
1:14 support
1:15 um individuals living with migraine and
1:18 other headache related uh conditions we
1:21 are federally we are a federally
1:23 registered charity as of february of
1:27 2022 so we’re super excited to have this
1:30 status awarded to us
1:32 our board is comprised of volunteers
1:36 we have a good mixture of healthcare
1:38 professionals and then others with um
1:41 competencies in like uh legal
1:45 um accounting
1:47 others with board experience
1:48 communications and that kind of thing so
1:51 um we have a really fruitful and really
1:53 engaged board so i’m happy to be
1:57 working with all of these individuals
1:59 and our front line team
2:01 is small but mighty and includes myself
2:03 as executive director and we also have a
2:06 part-time social media coordinator and
2:08 an events and programs administrator
2:15 all right so our mission is our mission
2:18 is to improve the lives of canadians
2:20 with migraine and other headache
2:22 other headache disorders through
2:24 our for our five pillars awareness
2:26 support education advocacy and research
2:29 and if you want more information on
2:32 exactly what our strategic purposes are
2:35 these can be found on our website
2:41 um i i have to take a minute to
2:43 recognize and thank um
2:46 from the bottom of my heart our our
2:47 sponsors um here is a list of all of the
2:52 industry partners that have supported
2:54 our webinars uh series so we’re very
2:57 grateful and thankful to have them on
2:59 board and supporting us
3:02 all right so why we’re here tonight is
3:04 the patient voice
3:05 so how to access medications in canada
3:10 um there are three ways to access
3:12 medications so it’s through
3:14 public access
3:15 private insurance and out of pocket
3:18 when we refer to public access this
3:21 means where the provincial government
3:23 provides product through their
3:24 formularies slash drug benefit programs
3:29 public plans public plans are paid for
3:32 and administered by the provincial and
3:34 territorial governments and most plans
3:37 cover medications and vaccines for
3:38 eligible groups so this includes seniors
3:41 recipients of social assistance and
3:44 individuals with conditions that are
3:45 associated with hydro pro
3:47 high drug costs
3:51 and and then private private insurance
3:54 coverage is provided by employers so
3:58 this is an employer who
4:00 purchases a
4:01 a benefit package to offer to their
4:04 employees and that is part of your
4:07 um
4:08 compensation package if you will
4:11 um
4:13 and then the third option is out of
4:15 pocket which is really the least ideal
4:17 option
4:18 is is when you have to like physically
4:20 pay for your your medications and i know
4:23 um
4:24 [Music]
4:25 this isn’t a great option for many
4:27 people
4:29 so i just wanted to talk a little bit
4:31 about my migraine reimbursement in
4:33 canada so approximately um the majority
4:36 approximately 75 percent of canadians
4:39 with uh with migraine have private
4:41 coverage so that’s again that’s through
4:45 an employer
4:47 and 25 rely 25 rely on the public drug
4:51 programs
4:54 the majority of private drug plans have
4:57 special authorization forms so it’s not
4:59 like a full benefit where it’s automatic
5:02 um it requires uh paperwork and it often
5:05 requires criteria where you have to like
5:08 try and fail on two
5:11 preventatives
5:12 um
5:14 before you you’re you’re eligible to get
5:17 coverage through your the provincial
5:19 drug plan
5:20 and unfortunately 1.8 of canadians don’t
5:23 have access
5:24 um
5:26 to
5:27 the public program or the private
5:29 insurers
5:30 um
5:32 and they kind of like fall into a bit of
5:34 a
5:35 crack as i say unfortunately um but
5:38 we’re working on
5:40 that
5:43 okay so advocacy uh
5:46 what is it
5:48 why do we do it how do we do it and to
5:50 whom do we do it
5:53 okay so advocacy is um basically it’s
5:56 it’s making social change policy change
5:59 it’s it’s changing the status quo we’re
6:02 trying to
6:03 create an environment in which
6:08 we have better options we have better
6:10 choices that kind of thing
6:13 it raises awareness to government to
6:16 employers to health care professionals
6:18 and educators
6:20 it’s working in partnerships and
6:21 building coalitions to strengthen our
6:24 messaging and it’s appealing for public
6:27 support
6:30 so who does it who does advocacy really
6:34 in a nutshell everybody can advocate
6:37 um people advocate and they don’t even
6:39 know they’re doing it
6:41 for example if you’re asking to be
6:44 referred to a specialist by your gp or
6:46 your nurse practitioner you’re
6:48 advocating for yourself
6:51 if you’re asking for
6:53 to try a different treatment you’re
6:55 advocating for yourself
6:57 think of it in really simple terms
7:00 even children advocate when they’re
7:02 pleading their case to stay up at night
7:04 or to go to a party so basically
7:07 everybody is advocates um it’s just a
7:11 matter of recognizing that and and
7:14 really
7:15 putting
7:16 all of the factors in play and getting
7:18 your message through
7:21 oop i think i went one too far let me
7:24 see
7:26 so there are two types of advocacy
7:29 there are individual and systemic so
7:31 individual advocacy focuses on the
7:33 person
7:35 systemic advocacy focuses on the system
7:37 the society and the domain of government
7:39 relations
7:41 if you were to ask me where my efforts
7:42 are
7:43 generally
7:44 placed my response would be i’m i am a
7:48 bit of both so i’m responsible
7:51 as a representative of my grand canada
7:53 to advocate um for advocacy strategy and
7:57 priorities
7:58 drug relations and policy so i do
8:02 advocate at the cadith level and the
8:04 pcpa level
8:06 pmprb national pharmacare
8:09 i also advocate at the public um and
8:12 private insurance um
8:14 levels
8:15 i’m also responsible for
8:17 uh in systemic advocacy for all
8:20 government relations so i’m building
8:22 relationships with elected officials
8:24 across canada and i’m keeping pressure
8:26 on government to raise awareness
8:28 increase support of the programs and
8:30 policies that affect migraine patients
8:32 in canada
8:33 and lastly i support individual advocacy
8:36 so focusing on the person and the people
8:39 supporting the community by
8:42 giving you guidance developing
8:45 resources and that kind of thing that
8:46 you can use for your individual
8:49 advocacy efforts
8:54 all right uh okay so who do we advocate
8:57 to
8:58 so
9:00 members of government so we advocate to
9:03 our mp it depends on where you are
9:05 located in canada it’s different
9:09 in each province so mps mlas mvps mnas
9:14 ministers ministers so not just the
9:16 minister of health
9:18 opposition critics
9:20 standing committees um non-elected
9:23 officials so political staff of
9:27 those that are elected so um assistants
9:30 aides advisors schedulers and the civil
9:32 servants so this is uh policy analysts
9:35 advisors drug plan managers
9:39 and others um this is kind of a new
9:40 bucket that i added into this
9:42 presentation but
9:43 who who else do we advocate to we
9:45 advocate to healthcare professionals
9:48 we have that advocate to um employers
9:52 um educators and to our family and
9:55 friends
10:00 all right so
10:02 where do we advocate so
10:05 we can advocate at the federal level
10:09 most of our advocacy efforts are at
10:12 provincial
10:14 this is where i spend a lot of my time
10:15 but part of my time is spent at federal
10:18 on larger policy issues that impact the
10:21 country so for for example
10:24 um
10:25 pmprb
10:27 which is pricing
10:29 is a federal um
10:31 [Music]
10:32 and also um
10:35 national pharmacare is a good example of
10:37 a federal
10:38 policy where i would be focusing some
10:41 efforts
10:42 most of my time is really spent at the
10:44 provincial level which is really trying
10:46 to advocate to raise awareness about
10:48 migraine and to put us on the map
10:51 and to to make
10:53 the people who are making decisions
10:55 be a be aware of the unmet need
10:59 for for new medications
11:01 there’s also regional and municipal
11:03 governments that can be advocated to but
11:05 those are more for
11:07 things like you know if you’re
11:09 advocating for
11:11 you know there to be a new um
11:16 soccer pitch or something like that so
11:18 that but most of our focuses uh you and
11:21 me are at the provincial level
11:23 um
11:25 and the issues so
11:28 our issues are access to medications as
11:30 i think probably everybody on
11:33 the webinar tonight would agree with we
11:36 advocate for access to care we advocate
11:40 for the
11:41 under diagnosed and under treated to
11:44 to have
11:46 access and be diagnosed we access to
11:49 disability programs um or sorry we
11:52 advocate to access to disability
11:54 programs and we add we we advocate to
11:59 eliminating stigma which is a huge um
12:02 part of the world that we live in
12:06 so non-government uh related advocacy so
12:09 where do we
12:11 who do we advocate to so um
12:14 we advocate to health care professionals
12:17 employers
12:18 private insurers
12:20 educators and again our family and
12:22 friends
12:23 um and and what are what are our issues
12:26 to to to the to these stakeholders so
12:29 again access to treatment options access
12:31 to care access to headache specialists
12:35 getting referred
12:37 uh second opinions workplace
12:40 accommodation and again
12:43 stigma
12:46 so how do we advocate
12:49 so we advocate in several ways we can
12:51 advocate by
12:53 email slash mail
12:56 phone calls
12:57 in-person meetings
12:59 lobby days and receptions
13:01 and we can also advocate by petitions
13:07 so i just wanted to throw in this slide
13:09 because i i
13:10 wanted to outline sort of what our
13:12 challenges are
13:13 so timing the canadian drug review
13:16 process from uh health canada to
13:19 review to pcpa negotiations takes
13:23 years it’s simply
13:26 not acceptable but it is a reality
13:29 pricing
13:31 as we have new innovative medications
13:34 coming to market these are more
13:36 expensive
13:37 than older generation
13:40 medications who are now generic and they
13:42 cost
13:44 pennies
13:47 they cost pennies
13:49 um the system i don’t think yet
13:52 recognizes the value of medications to
13:54 treat migraine and that’s part of the
13:56 conversations that i’m having with
13:58 government is what these new innovative
14:01 medications are actually bringing
14:03 to to to to migraine patients
14:06 and i guess again the the big s word
14:10 is stigma like migraine is not
14:12 understood and it is not recognized and
14:15 we have
14:17 we have a mountain to climb to change
14:19 thinking change thought
14:21 because people already have programmed
14:23 in their mind that migraine is just a
14:25 headache and so we need to educate and
14:28 change that thinking so that people are
14:30 aware
14:33 i wanted to just add in this uh this
14:35 slide about patients rights and
14:36 responsibilities so as a canadian you
14:39 have rights you have right to
14:42 treatment you have right not to be
14:44 refused urgent care you have right to a
14:46 diagnosis a right to coverage and even a
14:49 right to appeal if you think your rights
14:51 have not been respected
14:53 you
14:54 you also have um
14:58 as a canadian as a patient you you also
15:00 have responsibilities such as providing
15:02 accurate information to your health care
15:04 team asking questions to make sure that
15:06 you understand the information that is
15:09 being shared with you
15:11 is understood and that you’re following
15:13 your treatment plan
15:15 it’s important to you as an individual
15:17 to take an active role in your health
15:19 care and i can’t
15:21 stress that enough
15:24 um
15:25 you need to make sure that you’re
15:26 getting the answers that you need about
15:28 your disease
15:29 um and your condition and you need to
15:32 educate yourself and learn how to talk
15:34 to your doctor and other members of your
15:36 health care team
15:38 many people feel anxious when they are
15:40 first diagnosed and they and they can be
15:42 nervous when they talk to their family
15:44 physician or their specialist
15:47 but you need to understand your rights
15:49 you need to ask your questions you need
15:52 to
15:53 feel like you are um fully engaged and
15:57 that you’re you’re in the driver’s seat
16:02 okay so effectively we’re going to jump
16:05 right into government and then we’re
16:06 going to go into
16:08 healthcare professionals and then we’re
16:09 going to go into a bit of information
16:10 about employers so
16:12 um
16:13 the steps outlined in the next couple
16:14 slides um
16:18 are relevant to writing a letter
16:20 requesting a phone call or an in-person
16:22 meeting if you’re writing to the
16:23 minister of health you’ll likely only be
16:25 voicing your concern or expecting your
16:27 response
16:29 strongly encourage you to write to your
16:30 elected
16:32 local representative either your federal
16:35 member of pirate parliament so your mp
16:38 or your mpp or your mna again depending
16:41 on where you live
16:44 what’s really important is that you
16:45 develop three key messages that clearly
16:48 explain your issue and your concerns in
16:51 simple language
16:53 be brief
16:55 be
16:56 clear
16:58 be
16:59 have your facts
17:02 outlined um and be consistent in your
17:06 messaging
17:07 also recommend that you
17:10 have somebody read your email before
17:12 sending it um
17:14 so that it it makes sense to the person
17:17 who is on the receiving end of it
17:19 and again if you’re writing to your
17:21 local representative
17:23 i definitely encourage you to request a
17:25 meeting it’s their obligation to meet
17:27 with
17:29 the people of their jurisdictions the
17:31 minister of health yeah you’re likely
17:33 not going to get a meeting
17:35 you might
17:36 but i would always encourage you to
17:38 write to your local
17:40 representative and copy the minister of
17:42 health because the more the minister of
17:44 health is hearing about our issues
17:47 across the country the more traction and
17:50 attention that we’re gonna gain
17:54 okay so how to develop and i apologize i
17:58 keep
17:59 uh glancing off to
18:02 to my screen
18:04 how to develop your messages so there
18:06 are three key components in developing
18:08 your message so stating the problem
18:11 offer a solution
18:15 and what you are asking so
18:17 what is the problem so what is the issue
18:19 to be addressed
18:21 what’s wrong or needs to be changed and
18:23 why
18:24 and if you have a hook that can draw
18:26 people into your story that’s always
18:28 really
18:29 um
18:30 a great thing
18:32 offer a solution so how to solve the
18:35 problem
18:37 adding
18:38 x product
18:39 into the
18:40 formulary of x
18:43 provincial formulary
18:47 adding it to
18:48 the benefit plan of
18:51 the company that i work for
18:55 and and if there’s opportunity to draw
18:57 out what makes the news the story
18:59 newsworthy
19:00 and keeps people engaged that’s always
19:02 really positive as well
19:04 and we also want to have a call to
19:05 action so the behavior that we want the
19:08 person we’re advocating to
19:10 to do so what do we want the person to
19:13 do do we want the person to talk to the
19:16 minister of health do we want the person
19:18 to talk to the drug plan
19:21 or all of the above
19:23 so we need to have a plan
19:27 so determine your one ask so
19:30 what are you going to ask for choose one
19:33 thing not a list
19:35 you can always
19:37 go back
19:39 for more meetings or for more requests
19:41 so for example you might your one ask
19:44 might be to cover
19:46 uh cgrps
19:50 on
19:51 the alberta drug plan
19:54 or botox
19:55 alberta is not a good example because
19:57 botox is actually covered on their
19:59 formulary but
20:00 you know what i’m saying is so you have
20:02 one ask what is it that you’re looking
20:04 for i would like to have
20:06 aymavig jovi vaipti
20:09 covered on
20:11 x province’s drug plan
20:15 only choosing one requires you to make a
20:18 choice
20:19 so you you need to make a choice as to
20:21 what is most important to you
20:24 and again i i fall back to what i just
20:26 said you you can go back
20:29 in three weeks with
20:31 another ask
20:34 but you only you you can only make one
20:36 ask at a time
20:38 um
20:40 and you need to build your ask into your
20:42 call of action uh key message to help
20:44 ensure that it’s delivered
20:48 you can also explore opportunities that
20:50 might make your ass timely so like you
20:52 know election times are good to have
20:55 these conversations but that’s not
20:57 saying that any other time of the year
21:00 is not a good time to to advocate um
21:03 again your elected officials have a
21:05 responsibility to meet and listen to
21:08 your issues and your concerns
21:11 so
21:12 a sample outline of a letter or an email
21:14 so the first paragraph would be sort of
21:16 who you are and why you’re writing
21:19 and what your ask is
21:22 the second paragraph should include a
21:23 short paragraph about your personal
21:25 story and your link to the issue
21:28 how does migraine impact your life
21:31 what are your issues with accessing
21:33 treatment
21:34 the third paragraph should be a
21:36 combination of three messages
21:38 and some key facts about the issue and i
21:40 emphasize that you need in your all of
21:44 your advocacy efforts that you are
21:46 citing factual information
21:50 and then the fourth paragraph is you
21:51 restate what your ask is in bold
21:55 and the fifth paragraph is closing and
21:57 you’ll be in touch shortly to arrange a
21:59 time to meet or to follow up
22:02 um
22:04 yeah
22:06 so
22:07 if you secure an in-person meeting with
22:09 your local representative
22:14 do your research
22:16 know your issue inside and out and have
22:19 some facts to support
22:21 what your issue is
22:23 and if you can try to learn a little bit
22:25 about your government representative
22:28 we always advise
22:30 to prepare a meeting script to keep you
22:33 on track
22:34 have a leave behind so
22:37 you can create one yourself or migraine
22:40 canada will be adding um
22:43 a fact sheet that you can download from
22:45 our website um to our advocacy page
22:48 simply you know you can download it save
22:50 it and send it or bring it with you
22:54 always recommend that you take notes and
22:56 you write a debrief um more so to
22:58 yourself just because
23:00 you’re tracking the conversations that
23:02 you’re having and what was said and the
23:04 outcomes um so that you have that in
23:06 your back pocket if you need to do
23:09 additional further advocacy
23:12 and always always always send a thank
23:14 you letter and follow up on any
23:16 information that you promised to send or
23:19 action items that your elected official
23:20 committed to
23:23 okay
23:25 um so tips for a productive meeting now
23:27 that you you’ve written your letter you
23:29 have a meeting date and now you’re going
23:31 to you’re going to your meeting live um
23:34 or by phone
23:35 so try to develop a connection in the
23:37 introduction so uh maybe something you
23:40 have in common that may just come up
23:42 organically um
23:44 ask if they know about migraine assume
23:47 the person that you’re speaking with
23:48 does not know much and that you are
23:51 really the expert
23:52 expert and and have a short summary
23:54 prepared in explaining what your
23:56 condition is what your symptoms are how
23:59 your life is impacted
24:01 maybe
24:02 statistics on um
24:05 your province
24:06 um that kind of thing
24:09 and then dive into your issues so really
24:12 make it a 30 second pitch
24:15 of your issue kind of like what
24:17 everybody refers to as the elevator
24:19 pitch and then you always need to
24:21 present a solution have one ask
24:24 it could be very as it could be as
24:26 simple as
24:28 please include this medication on your
24:30 provincial drug plan so patients have
24:33 access to it
24:36 um
24:37 the leave behind again it should not be
24:39 longer than one page it should be
24:41 background information on the issue
24:44 and it should really include extra
24:46 information that you’re not really going
24:48 to get to in your meeting um but that is
24:51 factual and again migraine canada um is
24:54 developing a one pager that we’ll post
24:56 on our website for you to download and
24:58 share
24:59 um and if you can includes private
25:01 specific uh information if available um
25:05 i have a lot of um
25:07 provincial
25:08 stats so
25:10 you can feel free to reach out to me and
25:12 i i have a lot of that information
25:18 okay so
25:19 the one thing that migraine canada does
25:22 have recently launched in the fall of
25:24 2021
25:26 is an advocacy platform so it is a
25:28 seamless automated platform
25:31 you
25:32 we have five templates of different
25:34 letters for different topics so uh
25:37 people who are on cgrps
25:41 people wanting to go onto cgerp but
25:44 can’t because of access issues
25:47 people who
25:50 have been on and have had good
25:52 experience we have a botox letter we
25:55 have shortage of physicians and headache
25:57 specialist letter and we have tryptons
25:59 and we’ll be adding more
26:02 more template letters related to how to
26:04 manage
26:07 communications with with insurers and
26:09 also with employers
26:12 our advocacy platform has it has a
26:15 toolbox of advocacy tips that goes into
26:18 a little a lot more detail than what i’m
26:20 sharing tonight but basically the
26:22 process is has been made simple for you
26:24 um as i i love the word seamless so
26:27 basically you pick the appropriate
26:29 letter for your situation you enter in
26:32 the information
26:33 requested which is your postal code
26:35 what will pop up is your local
26:39 elected official
26:41 you select that person you select the
26:42 minister of health you personalize your
26:45 letter as you feel fit
26:47 and then you hit send and everything is
26:50 is kind of done for you so
26:52 um
26:54 really welcome feedback for those of you
26:56 who have done this or who will do it and
26:59 then have comments back to us
27:02 again you can you can access our
27:04 advocacy platform through our website
27:06 which is www.migrainecanada.org
27:11 and i will just say you know i’m always
27:14 encouraging
27:15 people to send in letters because
27:18 the government is hearing from me and
27:20 i’m representing the community but the
27:22 more
27:23 people
27:25 that
27:27 write into
27:28 their elected officials and their
27:30 ministers of health
27:33 it it will really make an impact we need
27:35 to get migraine sort of like on the map
27:38 if you will
27:40 and you’re the best person to share your
27:42 personal story i talk on behalf of the
27:44 community and i share the concerns and
27:47 everything but your voice is powerful
27:52 okay
27:54 um petitions uh the chronic migraine
27:56 support group canada um they have seven
27:59 active petitions if you i i
28:03 i wouldn’t say if you don’t want to
28:04 write a letter to your local
28:05 representative but in addition to
28:08 writing letters to your local officials
28:10 i would also encourage you to
28:12 take a look at these petitions and sign
28:14 on to these as well
28:16 you know
28:18 together we’re stronger and i
28:21 can’t emphasize enough to take a few
28:24 minutes to
28:26 try to
28:28 eliminate eliminate the stigma make
28:31 make
28:32 access to medications a reality and um
28:37 that kind of thing
28:39 so effectively engaging
28:41 healthcare professionals so how to
28:44 advocate with our healthcare
28:46 professionals what do we say
28:48 so always always always encourage you to
28:50 make a list
28:53 include
28:54 all of your symptoms from the last time
28:56 that you had an appointment or if it’s a
28:58 new appointment if if it’s a new
29:00 appointment
29:03 more so important to
29:05 [Music]
29:06 take the time to prepare
29:10 example migraine frequency and intensity
29:14 what is the pain level
29:16 sleeplessness nausea what is your mental
29:19 health like
29:21 all very very important things to
29:24 capture and to have sort of a record of
29:27 and we have lots of great um
29:32 trackers that can help you
29:35 with this information how long have you
29:37 had these symptoms are things getting
29:39 better are things getting worse
29:41 what
29:41 what kinds of medications are helping
29:44 you what have you tried um
29:47 what gets worse if you don’t take it
29:49 what gets worse if you do take it
29:51 make sure that you have a list of all
29:52 the medications that you’re currently
29:54 taking
29:55 including prescription drugs
29:57 over-the-counter medications herbal
29:58 remedies supplements if you’re taking
30:01 medications for a disease completely not
30:04 associated with migraine it’s important
30:07 for your your healthcare professional to
30:09 see everything that you’re taking
30:14 so
30:15 what to ask so it’s also really
30:17 important to put some time some time
30:19 into planning your appointment and to
30:20 write down questions you have i’m not
30:22 going to go through all these questions
30:24 we’ll put something on our website that
30:26 kind of gives you a guide but really
30:29 don’t be afraid to take notes we often
30:31 forget what we’re told during our report
30:33 appointments with physicians you may
30:36 also wish to bring a family member or a
30:38 friend along to medical appointments to
30:41 make sure that you don’t miss important
30:43 information particularly if you’re in
30:45 the middle of an attack
30:46 our brain is always foggy as it is and
30:49 so having somebody else there
30:51 to help us um is important
30:54 and you could as a courtesy just tell
30:56 your doctor why you’re taking notes
30:58 um
30:59 and again we’ll put sort of this
31:01 information on our website
31:03 as a resource that you can download and
31:06 kind of go through the questions and
31:08 select
31:09 as you feel appropriate
31:12 um how to ask for a referral or a second
31:15 opinion so
31:16 again i cannot emphasize enough do not
31:19 be afraid to ask for a referral or seek
31:22 a second opinion it is your right as a
31:25 patient
31:27 and it allows you to
31:29 have the opportunity to learn more about
31:31 your disease
31:32 to gain a different perspective
31:36 on the disease
31:38 your personal situation and on treatment
31:41 options and it also will provide
31:43 reassurance and a peace of mind that
31:44 you’re making the right treatment
31:46 decisions
31:48 many patients worry about telling the
31:50 doctor they plan to seek a second
31:52 opinion
31:53 but you shouldn’t most doctors are
31:55 pretty comfortable with the request
31:57 particularly if the doctor feels he or
31:59 she doesn’t have any more ideas
32:01 options to offer
32:03 telling a patient
32:04 that there is nothing more that he or
32:06 she can do
32:08 is is absolutely not acceptable and as
32:11 patients you should um you know stand up
32:15 for yourself and just say no there there
32:17 has to be something else we can do
32:21 so i i’ve thrown in a few slides about
32:23 um from our quality of life survey which
32:26 will be starting to
32:28 promote
32:30 in the fall
32:31 we ran a quality of life survey in
32:34 october november of 2021
32:39 we had a great response there was 1165
32:42 people who responded so i’m just i’ve
32:44 just pulled a few
32:46 um slides just
32:48 related to to this that might be of
32:50 interest to you so how were you referred
32:52 to specialized care so of the
32:53 respondents over 35 percent asked to be
32:57 referred so that’s pretty significant
33:00 um
33:01 great news primary care providers 57
33:04 took the initiative to refer so that is
33:07 really for me encouraging in that the
33:10 primary care provider kind of knows when
33:12 he or she has hit the wall and needs to
33:15 refer on to specialty
33:17 and eight percent of respondents took
33:18 the initiative to self-refer so
33:21 this number is a little bit um
33:25 i don’t know
33:26 crazy
33:28 um because in most provinces
33:32 you can’t self refer it has to be a
33:34 referral from a healthcare professional
33:36 so for those respondents who were able
33:39 to um that’s amazing and
33:42 um
33:42 [Music]
33:44 and good for them that they actually
33:45 went on to pursue that
33:49 how supportive was the gp or the nurse
33:51 practitioner when treating the migraine
33:54 only 42 percent of respondents think
33:56 their health care professional is
33:57 supportive and seven percent not
33:59 supportive so those numbers are
34:02 um you know a little bit noteworthy and
34:05 concerning
34:06 how knowledgeable is your gp slash nurse
34:09 practitioner when treating your migraine
34:12 so only 23 of respondents think that
34:15 their healthcare professional is very
34:17 knowledgeable and 62 are only somewhat
34:21 knowledgeable so again lots of work to
34:23 be done around educating our primary
34:25 care
34:27 providers
34:29 so effectively managing employers
34:32 so um
34:34 if your claim is rejected by an
34:36 insurance company so
34:38 and this unfortunately does happen so
34:41 check to make sure that you have not
34:43 um
34:44 that you have not had a claim
34:47 for some that you have not submitted a
34:49 claim for something that you’re not
34:50 entitled to so make sure that you
34:52 understand
34:54 what
34:55 is on your what is covered by your
34:58 private insurance
35:00 if you think you’re entitled
35:02 um
35:03 like if you’ve gone through and you’re
35:04 like yeah no like i i’m meeting all the
35:06 criteria i don’t understand the product
35:08 is on the formulary um
35:12 don’t let the first or second rejection
35:14 stop you
35:15 there’s generally an appeals process
35:19 that you can go through and just make
35:20 sure that your physician is on board and
35:23 supplying the necessary supporting
35:24 document to your advantage
35:28 sometimes
35:29 healthcare professionals make errors and
35:32 that is the cause of a claim being
35:34 denied so just make sure
35:36 that
35:37 you know the healthcare professional has
35:38 filled out the forms uh appropriately
35:41 and that kind of
35:42 thing if that fails contact the
35:46 insurance companies um ombudsman or our
35:48 compliance officer they all have them
35:51 and i know that this is escalating quite
35:53 a bit and and many of us don’t have the
35:55 time or the patience to do this but you
35:57 know if you really have
35:59 if you really feel like you have met
36:01 criteria then i encourage you to
36:04 pursue
36:05 um and i’m not going to go into detail
36:07 about the the rest of it um
36:09 you you can just take it up with the
36:11 yarn bumps
36:13 on budsmen
36:16 okay
36:17 so
36:18 i have private insurance but my drug is
36:20 not covered
36:22 if your employer
36:24 um
36:26 has excluded the drug from the benefit
36:28 plan
36:29 at this point you may decide if you’ve
36:32 not already to disclose your condition
36:35 to your hr manager or your supervisor
36:38 i generally encourage you to go right to
36:41 hr
36:42 um usually
36:44 i think
36:45 your supervisor may know um that you you
36:48 have a condition um
36:50 or maybe not but
36:52 it is the hr manager that has a
36:55 um
36:58 is more more more closely aligned with
37:02 what is covered and what is not on the
37:04 benefit
37:05 formulary
37:07 so describe your condition provide
37:08 information and ask your employer to
37:10 either update the drug plan to include
37:13 your drug as part of the plan or to make
37:15 an exception
37:19 you may have to provide information on
37:21 what migraine is
37:23 the symptoms
37:24 what you go through on a day-to-day
37:26 basis
37:29 if it’s not covered ask your health
37:31 benefits manager
37:33 why they decided not to cover the drug
37:35 i think in most cases for migraine
37:38 they’re probably not aware that there
37:40 are new medications to treat migraine
37:43 and how prevalent it is
37:45 in society
37:47 um
37:48 ask if there’s an opportunity to apply
37:50 for interim coverage um it is in the
37:53 best best fiscal interest of an
37:55 organization to keep their staff healthy
37:58 and on the job and i have a few
38:01 statistics
38:02 from our quality life survey that i’m
38:04 going to jump into
38:05 and of course document all
38:07 communications and exchanges that you
38:09 have
38:10 and we’ll be including some more
38:11 information and resources on our
38:13 advocacy website related directly to
38:16 employers
38:19 so i just wanted to highlight a little
38:20 bit about
38:22 impact on migraine
38:23 at work so only seven percent of
38:26 participants
38:27 who were working full-time reported no
38:29 impact
38:31 of migraine on the work so
38:33 for example there was no loss in
38:35 productivity there was no missed days
38:37 due to migraine
38:38 but more than one third of participants
38:40 36 percent reported that they
38:43 work full-time and missed several days
38:45 of work due to their migraines
38:48 and eight percent of participants
38:49 reported working only part-time because
38:51 of their migraines and they still missed
38:53 more than one day of work uh per month
38:56 so the impact is fairly significant if
38:58 you think about how massive our
39:00 workforce is
39:02 um impact of migraine on careers so
39:06 again more than three quarters of
39:08 participants indicated that migraine
39:10 impacted their career in some way
39:13 25 expressed that migraine limited their
39:16 ability to remain in a work position
39:19 and many were affected early in their
39:21 career
39:23 impacting their education journey 20 and
39:26 career choices 22
39:32 and disclosure of migraine at work so 63
39:35 of participants indicated that they had
39:37 disclosed their migraine diagnosis to
39:39 their employer
39:40 of the participants who disclosed
39:43 62 percent indicated that they
39:46 did so because
39:47 their migraine had a negative impact on
39:50 their work
39:51 um
39:52 and alternatively of the participants
39:54 who did not disclose
39:56 43 that they refrained from sharing
39:59 their diagnosis with their employer
40:01 despite its impact on work because they
40:03 were concerned about the consequences
40:06 so lots of work to be done on educating
40:09 employers
40:12 when we asked why did you disclose your
40:14 illness 62 percent of people disclose
40:16 their condition because it negatively
40:18 impacted their work
40:21 why did you not disclose your illness 43
40:24 of people
40:25 are impacted at work did not disclose
40:27 their condition because of concern for
40:30 consequences
40:31 so
40:32 maybe not being promoted being demoted
40:35 being
40:36 perhaps fired um
40:38 [Music]
40:41 okay so asking for accommodation in the
40:44 workplace or education institution so
40:48 really important if you’re going to
40:50 you know disclose your condition educate
40:53 your supervisor on migraine
40:56 explain how you are impacted in the
40:57 workplace
40:59 and life in general and how
41:01 accommodations could have a positive
41:03 impact on presenteeism and absenteeism
41:07 and you may even have to explain what
41:09 those two terms are
41:12 but be reasonable in what you’re asking
41:14 for
41:15 and again document all your
41:17 communications and your exchanges with
41:19 your supervisor or human ruler
41:22 human relations representative
41:26 so reasonable op reasonable
41:28 accommodations so
41:30 i’m not going to go into detail and this
41:32 is going to be recorded and you can look
41:35 at it but
41:36 um
41:37 here’s a
41:38 light list of
41:39 what reasonable accommodations look like
41:42 and this really can carry over in a lot
41:44 of cases to the classroom so
41:47 um probably should update this slide to
41:49 be migraine at work and in the classroom
41:51 setting
41:55 um and i just threw this in here because
41:57 i i thought it was a it was a great
41:59 slide and stats is
42:02 only 21
42:03 of the respondents in our survey could
42:05 confidently say that their coworkers
42:07 knew what migraine is
42:09 the majority 44 felt that their
42:12 coworkers had
42:13 little understanding of what migraine is
42:16 and 22
42:18 indicated that the co-workers did not
42:20 understand what migraine is at all
42:22 so again lots of work to be done in the
42:25 workplace
42:27 so just i wanted to talk a little bit
42:30 about the treatment landscape in canada
42:33 so at the current moment we’re working
42:36 on a report card that will give us a
42:37 snapshot of what
42:40 is covered across canada
42:42 in every province so tryptons we see
42:44 some coverage across canada
42:47 combined analgesics it’s a bit spotty
42:50 um botox is only covered in alberta
42:53 alberta is actually full benefits so
42:56 sort of like you know no
42:58 criteria to be met no
43:00 um
43:02 forms to be filled out it’s it’s quite a
43:04 simple process ontario quebec you have
43:07 to fill out some forms but it people are
43:09 getting access to it in those two
43:11 provinces the rest of the country no
43:13 coverage
43:15 cgrp so adobe is covered in all the
43:18 provinces across canada except pei so
43:21 we’re anxiously waiting for pei to make
43:24 an announcement
43:27 and this is great news because it’s
43:29 you know the first cgrp to go through
43:33 the pan canadian pharmaceutical
43:36 alliance negotiations which is called
43:38 pcpa and i apologize for acronyms on
43:42 these slides
43:44 um
43:44 mgality is currently being negotiated at
43:47 pcpa
43:49 um
43:50 so we’re just
43:52 anxiously waiting the outcome of that
43:54 for a positive letter of intent
43:56 which will
43:58 allow it to move on to provincial
44:00 listings
44:01 aimovig um the pcpa negotiations closed
44:04 without a letter of intent so
44:08 i am actively
44:09 advocating to
44:11 the jurisdictions about
44:13 the need for
44:16 all
44:17 cgrps to be included on the formularies
44:21 to create choice for patients and
44:23 clinicians
44:24 um
44:25 and then vayepti is is being reviewed by
44:28 cata
44:30 i’m actually preparing the submission
44:32 uh that has a deadline of monday to to
44:35 put in our patient input on that
44:37 um same with an sns’s
44:40 which is the
44:42 quebec
44:44 kind of
44:45 version of catted
44:47 the deadline is also next week so i’m
44:49 working with migraine quebec on that
44:51 submission
44:52 um g-pants um
44:55 ato japan the noc is anticipated at any
44:59 time our catholic submission has been
45:02 submitted as has the ns submission um
45:06 and
45:06 devices gamma core and cephali
45:10 they are not covered on any provincial
45:12 or private insurance program
45:14 so
45:15 that’s kind of the landscape
45:18 of what reimbursement looks like in
45:19 canada and
45:21 um
45:22 and why this takes up so much of my time
45:24 because it’s so important and we need to
45:27 get these products um
45:29 through the processes and actually into
45:31 the medicine cabinets
45:33 of
45:34 everybody in canada
45:38 um so what is migraine canada doing and
45:40 what is our messaging so i meet with the
45:43 ministers of health i meet with the drug
45:44 plan managers
45:46 i have outreach to meet with
45:49 other ministries so health critics
45:51 finance women’s health children
45:53 um starting to
45:56 develop our strategy for meeting with
45:58 employers we just had
46:01 a really
46:02 great webinar with capital one employees
46:05 of capital one and the feedback was
46:08 like
46:09 really really well received
46:12 and insurers um we we’re part of the
46:15 fall strategy is to to start meeting
46:17 with insurers and
46:19 um making sure that you know if
46:21 medications are being included on the
46:23 formula on their formulary
46:26 that it actually translates into
46:30 getting on to
46:31 employers
46:33 benefit packages so
46:34 um
46:37 public public reimbursement is
46:39 complicated and private reimbursement
46:42 through insurers is even more
46:44 complicated but uh we’ll get there and
46:47 it’s it’s definitely on our radar and
46:48 we’re working for it
46:50 and our messaging i’m not going to go
46:52 into detail like we just the unmet need
46:54 for
46:56 medications the unmet need for access to
47:01 specialists
47:03 um we need improved care and we need to
47:06 eliminate stigma which will play a large
47:09 part in kind of
47:11 pulling this all together
47:17 so resources that migraine canada is
47:19 currently working on
47:21 we’re actively working on a report card
47:24 which is going to give a snapshot of
47:25 what access to treatment and services
47:29 care looks like across canada by
47:31 province and we’ll really be able to
47:33 kind of call out the jurisdictions where
47:36 things look grim
47:38 which is most provinces but nonetheless
47:40 i think our our our decision makers they
47:43 need to see it
47:44 sort of in black and white
47:46 um
47:47 as i mentioned we did our quality of
47:49 life survey last fall
47:51 we’re just currently
47:52 working with the analysis of the results
47:56 um we’re working with two researchers
47:58 actually from the united states who are
48:01 renowned um
48:02 [Music]
48:03 researchers in migraines so they’re
48:05 they’re
48:06 actively helping us with um the analysis
48:09 and the cleanup of that data and then
48:12 from that we’ll be developing
48:14 resources so a report and infographics
48:17 that we’ll be able to post on the
48:18 website and have available for you to
48:20 share and also for me to share out to
48:23 um the the jurisdictions
48:27 we do have a fact sheet that we have
48:29 developed and so it’s just a matter of
48:31 getting that on the website that will
48:33 get up there in the very near future
48:35 we’re also working with pediatric
48:37 neurologists to develop resources for
48:39 parents um
48:40 to use
48:42 for their children
48:44 in the school system
48:45 and then
48:47 lastly we’ll we’ll be adding information
48:49 uh robust information on the provincial
48:52 and territory healthcare systems in each
48:55 province because as you probably know
48:57 each are
48:58 each province is unique they have
49:01 different criteria they have different
49:03 terms some use
49:06 exceptional access programs some use
49:08 special authority so we’ll be
49:11 highlighting sort of all of that so you
49:13 can just quickly go look up your
49:14 province you don’t need to know about
49:16 ontario and then know exactly
49:19 what it is how
49:20 coverages is
49:22 um
49:24 is is out
49:26 out rolled
49:28 and basically it’ll have it’ll be your
49:30 your place to go for navigating that
49:35 and
49:37 um
49:39 what else can you do so join our
49:41 community become a part of our community
49:44 at um
49:46 on our website and join the community
49:49 share your voice i really strongly
49:51 encourage you to take the time to write
49:53 to your elected official
49:55 asking for a meeting or just simply
49:58 stating your issues
50:00 in large part access to medication is
50:03 what i hear on a daily basis
50:06 but i need
50:08 i can only
50:10 do so much i really need
50:12 to sort of
50:15 um
50:16 hit our government officials with like a
50:18 tidal wave of
50:21 of your
50:23 shared personal experiences and and that
50:25 kind of thing because that really backs
50:27 up
50:28 what i’m saying to them so i really
50:30 encourage you to visit our advocacy
50:32 platform it’s very simple
50:34 um other than adding in your personal um
50:37 experience
50:38 it it’s really very seamless and again i
50:41 encourage you to sign a petition as i
50:44 mentioned before there’s seven petitions
50:46 that are active
50:47 um get behind um the chronic migraine
50:52 group and and sign your name to a
50:55 petition that literally takes like 10
50:57 seconds of your time
51:00 and
51:03 with that
51:05 i think
51:06 word
51:08 done
51:09 as we move to q a