[Diabetes-talk] Diabetes Action Network Division Meeting - July 2014

[Marcey Gonzalez]

Minutes are below..  (Have any questions, please do not hesitate to contact
me directly at  <mailto:marceygonzalez at yahoo.com> marceygonzalez at yahoo.com .

 

Cheers,

Marcey Gonzalez

Diabetic Action Network Secretary

 

 

 

2014 Convention Diabetes Action Network Meeting

 

DATE: July 3, 2014 

 

DAN Board 2013 - 2014 

President- Mike Freeman, Washington

1st Vice President - Bernadette Jacobs, Maryland

2nd Vice President -  Minnie Walker, Alabama

Secretary - Diane Filipe, Colorado 

Treasurer - Joy Stigile, California

Board Members: 

Maria Bradford, Washington 

Mindy Jacobson, New York

Jean Brown, Indiana

Debbie Wonder, Missouri

 

PRESIDENT'S REPORT

DAN PRIMARY MISSION - What does DAN Do? It is defined as a peer support
group. We are not medical experts but we support each other.  We advise that
everyone to consult their diabetes educator or medical team, for their best
diabetes treatment plan.  

 

WHAT DOES THE DIVISION DO - It's set up as a division to help individuals
within NFB.  There is a connection between good diabetes care and good
blindness skills. As a blind person, a person can manage it and should
certainly not address their diabetes for the reason that they are lacking
accessibility with equipment.  Insulin pumps are not fully accessible, but
aside from that, there is no reason that a blind person can't inject their
own insulin and take their meds.  We want to encourage people to take care
of themselves. We operate from the listserve called Diabetes Talk. If you
are not on the listserve, and would like to be, send an email to
<mailto:diabetes-talk-request at nfbnet.org> diabetes-talk-request at nfbnet.org.
You will need to confirm your request.  

 

ADVOCACY - Accessible Accucheck Voicemate System - they discontinued it and
the support of this accessible meter. President, Mike Freeman mentioned that
he is the main contact when people are informed that the Accucheck is no
longer available. There are two accessible meters available such as  -
Prodigy Voice Meter (totally accessible) and the Solace V2  (Semi
Accessible) with a large caveat.  There are glimmers of hope for the
accessible wireless insulin pump. Digitalize and Metronics were trying to
form a partnership where Digitalize would assist with tweaking Metronics
already existing accessible insulin pump. These conversations started in
June 2013, while Mike called for an update in January 2014, with no
communication response. 

 

FDA UPDATE- Regarding Group of insulin pen safety - Mike participated in on
a committee, and expressed concerns about -  1. We don't need to be told
that we need sight to properly manage diabetes, and 2. Much needed
accessible insulin pumps. He has not heard feedback from the FDA either
after expressing concerns.  January had an update, and written a reply - FDA
only had the authority to approve talking meters, insulin pumps, and other
devices, dealing with safety issues, not with accessibility concerns. It was
suggested to speak to the Department of Justice/  Accessible Medical devices
are in a no man land as far as the ADA.  A resolution was being presented
that the FDA be given authority to set standards for accessible Medical
equipment and devices.  Sandy Ryan gave a brief summary of the resolution,
during the Presidential Report.

 

RESOLUTION RELATED TO DIABETICS AND ACCESSIBILITY SUMMARY is as follows:
Source from  <http://www.nfb.org/resolutions> www.nfb.org/resolutions
Presented by Sandi Ryan

 

Regarding Making Diabetes Tools and Technologies Accessible to Consumers Who
Are Blind or Have Low Vision. Many advances in diabetes and diabetes-related
technologies, such as insulin pumps, continuous glucose monitoring devices,
and home dialysis systems offer great benefits, including more effective
diabetes self-management, independence, and an enhanced quality of life; and
blind and low-vision people also have the right to benefit from these
advancements in diabetes technologies but are deprived of the health
benefits that they offer because manufacturers consistently fail to
integrate nonvisual and low-vision access features into them, even though
blind consumers have been requesting this access for nearly thirty years;
and federal regulators and policymakers perpetuate this blatant
discrimination and fail to protect the rights and needs of blind and
low-vision consumers who have diabetes by failing to develop accessibility
standards and by failing to require developers receiving federal funds to
add nonvisual and low-vision access to their diabetes-related products; and
the Food and Drug Administration (FDA) approves all medical devices before
they can be marketed in the United States, but lacks the authority to ensure
the accessibility of diabetes technologies; and organizations such as the
American Diabetes Association, the JDRF the American Association of Diabetes
Educators, the American Association of Clinical Endocrinologists, and the
American Medical Association fail to advocate for nonvisual and low-vision
access to these lifesaving technologies: Now, therefore, NFB will engage in
action to end discrimination against blind and low-vision diabetics by
insisting that Congress give the Food and Drug Administration the authority
to mandate full accessibility in diabetes-related devices, and this
organization urge the Food and Drug Administration to work with the National
Federation of the Blind to create nonvisual and low-vision accessibility
standards for all diabetes-related devices, and then require manufacturers
to include nonvisual and low-vision accessibility in all new diabetes
technology before receiving FDA approval; and  it further resolve that this
organization calls upon national associations that advocate for people with
diabetes to join with the National Federation of the Blind to advocate for
nonvisual and low-vision accessibility in all future diabetes technologies
so that all people with diabetes, including those who are blind or have low
vision, may benefit from these technologies.  

 

CLOSING PRESIDENTIAL REMARKS - Mike Freeman mentioned that if each member
brought in 10 individuals into the group, it would certainly be highly
recognized. That's the way an organization/group gets influence, as well as
being committed yourself. 

 

SESSION PRESENTER - SANDI RYAN, REGISTERD DIETICIAN. Sandi Ryan presented on
the more popular diet strategies as part of an individual's Diabetes
Self-Management. 

 

ACCESSIBLE EQUIPMENT PRESENTERS - Script Talk and Access A Med

Envision America - Script Talk - It's a device that reads your prescription
by using a label that the pharmacy adds on to.  It's widely more available
these days.  They even have large print available, along with voice over and
Braille.   Script talk is free to the user by the pharmacy that offers the
reader.  Walmart, CVS is doing it over mail order and even small chains as
well. Most pharmacies will do it upon request.  iPhones do not have the
capacity to be used with the script talk, but the android does have the
capability.  

 

Access A Med - Digital Audio Label -  Access a Med presented as well for
their Digital Audio Label, a chip that fits on the bottle,  and reads the
prescription information.  It was on the market, July 2, 2014.  It's a
button directly on the bottle that can be pressed up to 400 times for the
prescription information.  They can be available if customers encourage
pharmacies to participate. There is no cost to the consumer. They are in
talks with Target and other pharmacies. 

 

ELECTIONS  - Nominations were made, each candidate had the opportunity to
have a 30 second speech and then voting took place, votes were counted by a
sighted individual by voters standing for their chosen candidate. The board
for 2014-2015 is as follows..

 

DAN BOARD 2014 - 2015

President- Mike Freeman, Washington --  <mailto:k7uij at panix.com>
k7uij at panix.com

1st Vice President - Bernadette Jacobs, Maryland -
<mailto:bernienfb75 at gmail.com> bernienfb75 at gmail.com

2nd Vice President -  Sandi Ryan, Iowa -  <mailto:sjryan2 at gmail.com>
sjryan2 at gmail.com

Secretary - Marcey Gonzalez, Texas -  <mailto:marceygonzalez at yahoo.com>
marceygonzalez at yahoo.com

Treasurer - Joy Stigile, California -  <mailto:JoyStigile at gmail.com>
JoyStigile at gmail.com

Jonathan Franks, Texas -  <mailto:franks.jonathan13 at gmail.com>
franks.jonathan13 at gmail.com

Ruby Polk, Missouri-  <mailto:rubypolk0 at sbcglobal.net>
rubypolk0 at sbcglobal.net

Debbie Wonder, Missouri -  <mailto:debbiewunder at charter.net>
debbiewunder at charter.net

Jean Brown, Indiana -   <mailto:jb007d at att.net> jb007d at att.net

 

SECRETARY REPORT

Summary of Minutes of July 2013 - Minutes were accepted 

 

TREASURER REPORT

Beginning Balance $1886.55

Deposits $240.00

Withdrawals $280.80

Closing Balance $1845.75

 

NFB - $200 Donation ($100 to White Cane, and $100 for TenBroek)

 

Last year's contributions were not made, but voting was conducted to
continue with the contributions for this year and last year. $400 total
($200 to WC, $200 to TenBroek)

Treasury report was approved

 

CONFERENCE CALLS - Board conference call should be 4, but there was 2 in the
past year.  Quarterly Conference Calls for speakers.  Promote speaker
session calls on the listserve for outreach every 2 or 3 months, and also
possibly having a calling tree from names off the white cane list.  An idea
was presented to have a partnership to adopt another state that does not
have a DAN to encourage and mentor them for a DAN.  States that have DANS -
Oregon, NY, NJ, Tenn., Cali, Georgia, Kansas, Missouri, Ohio, Iowa, Indiana.
Call meeting will be coordinated once we can get an organization of board
member schedules. Discussion for first call - Adoption Mentoring of States,
Fundraising, and Possible Outreach Sessions through the year such as
coordinating speakers for the calls, and any other special projects. Call
Mike Freeman, President, or email if you have any ideas. Contact Information
- phone number (360) 576.5265 or  <mailto:k7uij at panix.com> k7uij at panix.com.

 

MEETING ADJOURNED