A Registered tax deductible health charity focusing on. Chronic Obstructive Pulmonary Disease

Transcription

1 A Registered tax deductible health charity focusing on. Chronic Obstructive Pulmonary Disease

2 What is COPD? C hronic - means it's on-going; doesn't go away O bstructive - means it's partially blocked P ulmonary - it's in the lungs D isease - An illness COPD is a progressive lung disease that affects more than 750,000 "diagnosed" Canadians. However; a recent survey conducted by the Canadian Lung Association puts that number at 1.5 million with potentially another 1.6 million individuals unaware they may have developed it. There s no cure and it s not reversible. In a nutshell, breathing becomes more and more difficult and in time you ll die from either an acute exacerbation or infection and/or health problems that you may develop because of the strain on your body and the body s organs due to this disease.

3 About Our Organization We have approximately 1,200 registered members Most are patients although 8% are in the medical field. I.E. RRT s, RN s, LPN s, COPD Educators and a handful of Doctors. We have several offices across Canada, but all are home offices We have no overheads, we pay no salaries nor do we issue honorariums. We re all volunteers. We work from donations with ALL monies going back to the patients in some form. We supply educational materials, i.e. brochures, pamphlets, DVD s, newsletters, medical info cards etc. We educate, we advocate, we support. We do whatever we can do to help. Everything we make available is Free of Charge. We also maintain an extensive disease information website which is updated weekly, as well as a COPD, peer to peer, public access forum and a separate caregivers forum. We also have an RRT to answer questions. We learn and share from, and with, each other. We re involved with various COPD related organizations, and have assisted in several studies. We also sit on the Steering Committee of the National Lung Health Framework.

4 So without traditional physical street offices, how do we reach or communicate with each other? And how did we conduct our review and make a submission to CADTH?

5 Communication: Mainly through the Internet, e mails, our forum, our main Website, the telephone and Skype. For those members not on line, we use the phone or the mail to reach them. We network. Even our AGM is held on line every year. How Did We Do Our Info Gathering and Submission for CADTH? The Internet! We took CADTH s form submission suggestions and the general information of what was being sought, used it as a guidepost, and built a survey for patients from there. We then uploaded the questionnaire to our main website. Our next step was to contact and inform the patients of its existence and the need for them to take a few minutes to fill it in and submit it back.

6 -We sent an e mail to our members asking them to participate by taking the survey -We informed our Public COPD forum of it and the need for their input and encouraged them to participate. -We contacted 3 of the more well known American forums and asked if we could post a notice on their Board. Note: Although we were seeking only Canadian patients, and though we couldn t use the info from the US patients, we offered to share the results of the survey with the Administrators of those forums since the drug was not yet approved in the United States. We then analyzed and tabulated the results, throwing out the info from non- Canadian participants and those patients who didn t fit in a segment of the disease parameter that this drug was developed for. A fair bit of the information we supplied to CADTH was in the form of statistics and percentages.

7 We had approximately 200 patients participate. We asked such questions as: -What the most difficult aspect of their disease was to control -How (their disease) affected them on a daily basis -How it impacted their QOL -Side effects they re experiencing from their current meds -The impact and what % of their family s income was spent (out of pocket) on their medicines. Did it create a hardship or did they have to forego meds? -What medicines/therapies they were currently on -How many exacerbations (flare ups) they experienced annually -How many of those flare ups necessitated trips to Emergency Rooms or hospitalizations We then compiled the responses and and filled out CADTH s template.

8 Our 2 Biggest Challenges. Apathy - getting patients to go to the site and spend approx 15 minutes filling in the form And; the extra workload the survey created. We have no advertising budget nor do we have office staff.

9 If I had to make any suggestions to patient organization it would be as follows. - Know your target audiences - Drop your personal feelings about a company or organization outside the door -Be, or stay connected and informed - Be acquainted with the proposed drug and what it s purpose or intent is. (In our case the drug s purpose is/was to reduce exacerbations) - Build and apply your questions around what the drug is intended to do and how patients might benefit, and.. how it might save money overall. -When building your Q s, Look at all the angles and change your hat for each target group. I.E. As a patient. How will it be of benefit? From an overall savings to our Health Care system, insurance, both private and publically funded. The benefit?

10 In other words; Will it improve a patient s health and or quality of life and will it be a good bang for the buck from a financial aspect - re: the additional stakeholders involved such as; the insurance companies, hospitals, Dr s, Emergency Dept s etc. Cost vs COST!

11 And Remember.. Anything worth doing, is worth doing right so be prepared for a bit of work. As for CADTH and the review process, I have minimal experience so I cannot comment or make recommendations. As an observation however, it s been 6 months since we supplied our feedback and I ve noted on the status of the drug in review that the on -line info was/is slow to be updated and timelines aren t followed (or the results reported in a timely fashion)

12 From all of us at: Thank You and Easy Breathing..