A Conversation with the President of Hemophilia Ontario

Okay, so today I'd like to welcome

everyone to this episode of the flow,

2

and I'm really happy to have our

special guest speaker here today.

3

Today we have with us Cam Peters,

who is the president of our board

4

of directors of Haemophilia Ontario.

5

And Cam actually doesn't bring just

professional experience to the role,

6

but he also has severe hemophilia A.

7

So lots of investment

into our organization.

8

So welcome, Cam.

9

Really great to have you today.

10

Thanks, Natalie.

11

It's really exciting to be here today.

12

I remember when HeroX and this podcast

and a lot of your work was just an idea.

13

So it's pretty exciting to be here now,

actually live talking to you about it

14

and it's just a credit to all the work

that you've done pushing forward this

15

really important work for their community.

16

Oh, thanks, Cam.

17

That's great.

18

So I have a couple of

questions for you today.

19

So we'll just get started.

20

So the first question I thought of

that I really thought would bring some

21

great insight is, in your opinion,

what are the challenges that women and

22

those with the potential to menstruate

with bleeding disorders actually face?

23

I think if I can put it down to one word,

I would say that word is recognition.

24

That's been an issue that's been going

on for decades, is women that, whose

25

lives are impacted by bleeding disorders,

have always had an issue just getting

26

recognized on any level, whether that be

within their interpersonal relationships,

27

family, and of course, in health care and

getting those needs addressed properly.

28

So, It really is about recognition from

my perspective and everything I've seen

29

in my time in the context of the medical

system in particular, it's getting

30

that recognition at the primary care

level, getting other family doctors

31

who, of course, have busy practices and

many things they have to think about.

32

However, those people having the right

skills, tools, abilities to recognize

33

when things are not normal and when

there are interventions needed has just

34

been a significant issue for a long

time and is still an issue that we're

35

working on, you're working on right now.

36

So, the recognition piece, especially

the primary care level, is just crucial.

37

Yeah, I love that word.

38

I love that word recognition.

39

And I think that's really powerful.

40

And I think that a lot of the members

of our community and beyond would agree

41

that recognition continues to be a

challenge and continues to be something

42

that we're all working towards in terms

of really having that conversation out

43

there and that awareness out there at

all levels, as you said, whether it's

44

a primary care provider, Or women and

menstruators out there with potential

45

bleeding disorders that don't even know

they have it and just even creating

46

that space to have that recognition.

47

So I really appreciate that because I

think that's a really, really key word.

48

And as President of Haemophilia

Ontario's Board of Directors, why

49

are women and menstruators with

bleeding disorders important to you?

50

There's two reasons that I can point to.

51

Number one is that there's just been

so many people in my life, people

52

that I met in the community that have

significant issues and complications

53

from their bleeding disorders, whether

that's people in my family with iron

54

deficiencies, going right up to other

women that have had significant.

55

Issues in terms of pregnancies

and and there are some women with

56

bleeding disorders, including

severe forms of on willow brands.

57

I have significant joint arthropathies and

major joint issues, including replacement.

58

So, the 1 side of it for me, personal,

it's just the personal part of people

59

that I've known what I know, and

60

all the people I know in the community

and the things I've learned so that's

61

really important to me on a personal

level from an organizational perspective

62

Women's bleeding disorders are important

for the work that I'm involved with

63

and the guidance that I can help to

give within the organization Because

64

we really need to move the ball forward

when it comes to on the ground care for

65

women and people who are menstruate.

66

That's crucial from my perspective.

67

There's been lots of talk within

the medical system and our community

68

organizations about these issues

going back for well over a decade.

69

And that's all been well and good.

70

But what I see is a real lack of making

a difference on the ground, taking the

71

talk to action and trying to focus on

the larger public health care issue.

72

So When it comes to our work at the, the

board level in hemophilia, Ontario, we

73

need to start to work with the recognition

that, first of all, the broader women's

74

bleeding disorder community is large,

especially when you factor in a condition

75

like von willebrands, we're talking

about tens of thousands of people and von

76

willebrands is an equal number of people

77

78

So that group is large,

much larger than the group.

79

We typically serve and

have served traditionally.

80

So getting that mindset to our group,

making sure that the way that we program

81

the way that we educate the way that

we are run organizations reflective of

82

that and then just making sure as well

that all of our programming reflects

83

the need to address that community.

84

So, for example, we have

run a program for male.

85

Caregivers called just the dads

for decades, very successful,

86

longstanding program.

87

And we realized that we had it was

called just the guys and we realized

88

that we had a lot of girls, young girls,

teenage girls with dads who definitely

89

could use, a positive environment

some guidance on how to deal with

90

bleeding disorders for girls too.

91

So we changed that to just the dads

and we've had fathers attend with their

92

daughters there now for several years.

93

All of our camp programming is

available to everyone with a bleeding

94

disorder and I'll give another example.

95

Our recent youth.

96

Adventure and mentorship program aimed

at teenagers with bleeding disorders.

97

We've had significant female

attendance there as well.

98

So, from an organizational perspective,

it really is about just making sure that

99

everything we do reflects the need to help

that community from planning to execution.

100

Right and I liked how you framed

it in almost two different buckets

101

in the sense of a personal piece of

it being important to you from what

102

you've witnessed from a personal place.

103

And for those that you care about

and and have seen sort of what that.

104

Looks like in a lived experiential

way, and also from an organizational

105

perspective about what that movement

really has to look like and how all

106

of those components come together.

107

So I, I really like how you touched on

the examples of all of those pieces.

108

So thanks for that.

109

That was really rich of an answer

in terms of the importance to you.

110

And I think it's just so meaningful when

you have a board of directors that is

111

invested, both on these sort of personal

and professional ways, because I think

112

that it really brings a rich passion to

all of the desire and everything that

113

we do at the organization and how to

move it forward and how to best serve.

114

And how do we make sure that

we serve those that are in the

115

community and can really benefit

from our community and beyond.

116

And as you said, there's no shortage

of work to be done in the sense of even

117

if we talk about VWD with it being sort

of just universal across the board, and

118

all of those that are still even waiting

for a diagnosis or haven't even been

119

alerted to a potential bleeding disorder.

120

So thanks for that.

121

Now, the next question so I'm going

to be careful with my language on this

122

question, because I know that we're really

wanting to be inclusive in our language.

123

But historically, bleeding disorders

have been associated with males and by

124

males, I'm going to draw on cisgender

males, because that's the default.

125

And when we think about the

history behind it we associate.

126

Cisgender males with hemophilia,

and that's, that's been the ongoing

127

understanding of bleeding disorders, but

so for the purposes of this question,

128

I'm going to say, how do you think.

129

men in the community, but I'm gonna,

add to that and say individuals.

130

It could be anybody, but I chose the

word men just sort of for that default

131

perspective of how there hasn't been

as much attention paid to women and

132

menstruators with bleeding disorders.

133

So with that in mind, I'm going to say,

how do you think Men in the community

134

can support and advocate for women

and menstruators bleeding disorders,

135

especially with that history of there

being that dismissed kind of approach.

136

Of course, and I think that's totally

fair, and I've seen that history

137

myself play out, and it's unfortunate.

138

So, what I can say is that the most

important thing is just to listen.

139

There's lots of women who are well

capable of speaking for themselves,

140

and have some pretty heartbreaking, but

important stories to tell about their

141

own experiences and lives, and From my

perspective, it's just important that we

142

make space for those stories and that we

listen and to come back to what I said

143

earlier to recognize the reality of those

situations there, we have this community

144

where we have a lot of men that have

significant health issues because of their

145

bleeding disorders and their hemophilia.

146

That's reality.

147

And I think sometimes

that leads to people.

148

Men, when I say people thinking that,

you know, my condition is that much

149

more serious and people that maybe

don't have it quite as bad as me aren't

150

really worthy of being listened to,

cared for, advocated for, and supported.

151

And that is part of the

reality of our community.

152

So when I say listen to those people in

particular, I say, make sure that you make

153

the space to listen and be empathetic.

154

And understand that in some cases, it

won't necessarily be as significant

155

in terms of the impacts as a man

that I've had, but that doesn't mean

156

that it's not important and that

we shouldn't be recognizing those

157

experiences and doing something about it.

158

I really love the word listen.

159

And I think that applies, you

know, again, we're using that

160

language, but I think that applies

to everybody in the sense that.

161

Listening has been an ongoing challenge.

162

If we loop back to that very first

question around recognition, listen

163

is another really great word in

terms of listening and appreciating

164

what individuals are experiencing.

165

And I also really like how you

drew attention to the comparison.

166

And I think that's important.

167

Probably been very problematic all along

the way about this comparison and this

168

definition of severity and you touched

on that in the sense of we're not doing

169

anyone any favors by comparing severity

because we know even just with recent

170

literature that quality of life severity

comes into play and Kind of has to be

171

factored into that for so many women

and menstruators living with bleeding

172

disorders and what their quality of

life is and how that also impacts them.

173

So I really appreciate how you brought

in that that comparison is not necessary.

174

In support and advocacy and all of those

things that you can offer and and just

175

the importance of listening and and I

would maybe add to that, even validating

176

those experiences and that need for

treatment and good care and all of

177

those things that come within the system

that sort of women and menstruators

178

are continuously challenged with.

179

So thanks for that.

180

Really that those what that

highlighted and if I could just say,

181

I think the concept of validating

is great and I'm glad you raised it.

182

And that's the perfect way to put it.

183

And that's what I think men

in the community need to do.

184

You also mentioned quality of

life and for me personally,

185

that is a significant issue.

186

I don't think we should be treating

that as some sort of nebulous.

187

Non medical consideration, which

unfortunately is sometimes is

188

with a lot of the health care

providers that we deal with.

189

Yes, but I believe it's

absolutely crucial.

190

We can be alive and surviving with

what we're dealing with, but if

191

our quality of life is poor, it is

going to have other impacts on us,

192

including mental health impacts.

193

Ultimately impact our ability to be

productive members of our families,

194

our communities and a society.

195

Absolutely.

196

So quality of life is crucial

and especially for women

197

with bleeding disorders.

198

That's a big impact.

199

And the reality of our society stays women

still have a lot of care responsibilities

200

in the home for families and children.

201

And when quality of life is impacted by

medical issues, like bleeding disorders,

202

it can have a lot of impacts on people,

even within the family structure.

203

So, in terms of validating those

experiences moving forward,

204

looking at things we can do

to improve quality of life.

205

Within the community within

our organization from my

206

perspective is absolutely crucial.

207

Yeah.

208

Thanks for that.

209

Because that that is so very true.

210

If a menstruator isn't going to

maybe have an injury or something

211

that's fatal, but if every month

they are dealing with losing a good

212

week to week and a half out of.

213

Regular living or quality of

life, or as you say, family life

214

or work life or things like that.

215

These are major impacts and and you're

right, haven't been given the same kind of

216

attention or validation of what it means.

217

So thanks for that.

218

That's absolutely true.

219

And I think it's a big priority, certainly

for us at Hemophilia Ontario, but I

220

think in general around that awareness

raising and again, going back to that,

221

it's not a comparison of severity.

222

It's a different form of severity

really in how it plays out.

223

So with that in mind in terms of even.

224

sort of role in the organization

or the board of directors.

225

What would you say?

226

How, can women or menstruators

play a role in the organization

227

or the board of directors to

help advocate for their needs?

228

Show up.

229

I'm serious.

230

There's lots of opportunities within the

organization, whether that's volunteering

231

particularly, of course, With the work

that you're doing, Natalie, but up to

232

and including our board level, we are

looking for everyone with all kinds of

233

different experience, including women

and people who menstruate to come and

234

be part of the team that helps support

the community, including the board.

235

And we have all kinds of opportunities

for people to come and learn as well.

236

You don't have to come to us and

I'll speak to the board side of it.

237

You don't have to come with.

238

You know, wealth of board experience

or particular professional skills.

239

Those are all great things, but we're

creating spaces to have board interns

240

come and serve with us for a year just

to come and to listen and to learn

241

about how we function and how boards

function, how the organization functions.

242

So we're creating opportunities for

people to come in to learn to hopefully

243

become the leaders of tomorrow.

244

That's an important prerogative for us.

245

In our programming as well, for

example, I mentioned our youth

246

adventure and mentorship program.

247

We are creating leadership opportunities

within that program for kids who are

248

getting into the early 20s to become

part of the running of that programming

249

and we will be happy to support.

250

Women in those roles as well to get

leadership and mentorship training

251

and opportunities at a smaller

scale within a comfortable confines,

252

which is our community to help build

up their own skill sets as well.

253

So, and we need those voices.

254

They're just crucial.

255

I've got a pretty decent understanding of

where the needs of the bleeding disorders

256

community sit with women, but I don't

pretend that I have the lived experience.

257

And I know.

258

Everything there is to know about that

I value the people on our board who

259

are women who have bleeding disorders

and what they can help add to our work.

260

We've got some awesome people that we

work with over the years, and they're

261

more than capable to speak for themselves

and driving this agenda themselves.

262

So, I wasn't kidding when I said show up.

263

We Mm-Hmm . We are looking

for people to come.

264

We are help happy to help create

situations where women with

265

bleeding disorders can learn.

266

And we'll be happy to support them in

helping run the organization, supporting

267

the community now and going in the future.

268

I really appreciate that you

highlighted that they don't need board

269

experience or a special skill set.

270

Skills are great, but people

have lots of transferable skills.

271

And there's no set requirements

automatically out of the gate that

272

they require to come and join and be

part of creating directions around

273

where the organization goes and I know

what I've often seen as all too often.

274

Caregivers of Children with

bleeding disorders will come out

275

and want to be that voice, which is

fantastic, and we need that for sure.

276

But I think we also, I love that

we're encouraging that women and

277

those with the potential to menstruate

really come and have that place,

278

not just for maybe your child.

279

But for you and your needs and where

you want to see the organization go

280

and focus on and be that voice at

the table that helps advocate for,

281

as you said, that lived experience

and those needs that are unmet.

282

Because to your point exactly, you can

have a pretty good Idea of the landscape

283

and what's happening, but nothing

takes replaces that voice at the table

284

saying this is what this group needs.

285

This is what we need to be focusing

on or where we need to be taking it.

286

And those opportunities are plentiful,

especially within our organization,

287

because we're so welcoming to

having those Seats at the table.

288

So I really like that.

289

You pointed out.

290

There's there's no special requirement

Necessarily that that is needed and and

291

we do need those voices to help further

it along Yeah, and you mentioned the

292

concept of advocacy which is just crucial

especially as people take on leadership

293

roles with our organization within the

community And if I could put the call out

294

for for women or people in menstruate who

want to join us I just want to emphasize

295

the importance of advocacy and coming

with the mindset of bringing ideas and

296

energy and action to the table that really

drives on the ground results in this area.

297

As I mentioned before, it's been

an area that's been recognized in

298

the community and healthcare for

several years, but what we're really

299

interested in is actually making.

300

Positive changes on the ground, actually

impacting people's lives with our

301

programming or advocacy and our services.

302

So we want people to come.

303

We want to hear the stories.

304

We want to make these people

part of our leadership team, but.

305

From my perspective, most importantly,

we need people who can come with

306

the energy and the ideas and the

mindset to drive that change.

307

Right?

308

Right.

309

Absolutely.

310

And I would, I would also do an

additional call out and just say that

311

even if maybe a board of directors seat

is not quite what you're ready for one

312

of the things that I've just started

doing in my department is having a

313

monthly peer support group meeting.

314

And we come together and we just

talk and we talk about experiences.

315

We talk about things that maybe

some of the members need from the

316

organization or want to see different

or want to see happening for them.

317

So, even if you're not quite ready

for that level of involvement.

318

You know, feel free, please to reach

out to me and join our monthly group

319

meeting because it's it's a really rich

place for dialoguing and brainstorming

320

and creative thinking or just being

a part of something where other

321

people understand your experiences.

322

So, you highlighted for that for

me cam to just really bring that

323

up and mention it out there in

case anyone is looking to join in.

324

So I guess my last question for

today is, do you have any final words

325

for people in the community to help

raise awareness of women and those

326

who menstruate bleeding disorders?

327

First, I would say support

the work that we're doing.

328

Support HeroX.

329

Use that as a resource.

330

Be active there.

331

Participate in the programming

that flows through that mechanism

332

and the work that you're doing.

333

Of course, we created that

specifically to help women's bleeding

334

women with bleeding disorders.

335

So it is a really unique mechanism

that you were instrumental in

336

creating, of course, Natalie,

and the way that people can help.

337

With awareness is just simply

by participating and taking that

338

opportunity to jump on what is an

awesome set of educational tools

339

and a communications platform.

340

You can also support hemophilia Ontario.

341

I hope it's evident to everyone by

now how important this issue is.

342

For the organization for myself

and our leadership team, our

343

executive director, Byron James.

344

This is an issue that has been

central to his work with us

345

for the last 6 years as well.

346

Absolutely.

347

We've made great strides so

far and continuing to support

348

those strides would be.

349

Would be crucial to making things better

for women with bleeding disorders.

350

And as I said before, I would just

encourage people to show up and to

351

participate the best way to make the

change that you want to see is to step

352

forward and and make that change happen.

353

And we've got through your work through

our board through our entire organization.

354

We've got the ability to help people

and support them to make that change.

355

We just need the people to come and to

help and participate and be part of it.

356

Absolutely.

357

Well, I want to thank you, Kim, for

being a guest on our podcast, The Flow.

358

This was wonderful to have you and another

voice that really sort of adds to the many

359

voices that we're collecting on The Flow.

360

And also to just really provide

some information to those out

361

there that really might be

wondering, how do we get involved?

362

What does on Haemophilia Ontario's

Board of Directors think about all this?

363

And I just really

appreciate your time today.

364

So thanks for joining me.

365

Oh, you're welcome, Natalie.

366

It's my pleasure.

367

Thank you for all the work

you're doing in this area.

368

You've been a trailblazer on women's

bleeding disorders, and it's been

369

a pleasure the last several years.

370

I'm really happy to keep

working with you going forward.

371

I think there's a lot more

we can achieve together.

372

So thank you.