Medical and Disability Aids and Equipment
Review Sept 2013
Contact:
Deborah Robins DIRECTOR (QLD)
MOBILE 0407 438 965
EMAIL [email protected]
PO Box 468, Smithfield. Qld 4878
PHONE 1300 70 60 89
www.duchennefoundation.org.au
Introduction
This submission is meant to contribute to the Medical and Disability Aids and Equipment Review in a
very brief and specific way; in keeping with our scope and also the fact that we are a voluntary
organization, whose stakeholders in many cases, earn a living and have a burden of care. Although
we consist largely of laypersons, we have acquired a great deal of information specific to our
disorder via our networks.
About Duchenne Foundation
Duchenne Foundation formerly Parent Project Australia registered in 2003, provides support to
families living with Duchenne, raises community awareness and vital funds to support research and
quality of life issues. The only national in scope Duchenne support organization, we fund research
and the therapies that will prolong our children’s strength, quality of life and mobility. We
disseminate educational publications and organize biennial national conferences to bring world
experts to show us how to optimize our children.
What is Duchenne muscular dystrophy?
Duchenne occurs when there is a mistake in the gene responsible for producing dystrophin,
the protein that maintains the structure of our muscle membrane. ‘Genetic’ does not mean it is confi
ned to certain family trees. In over two thirds of cases the genetic mutation happens spontaneously,
without any previous family history.
DMD affects one in every 3,500 boys across the globe and is both the most common and severe
form of over 70 different types of muscular dystrophy. Due to progressive deterioration
of muscle, loss of movement occurs eventually leading to total immobilisation.
When a boy is diagnosed with Duchenne he will lose the ability to walk somewhere
between the ages of 7 and 13 years and is usually dependant on a wheel chair by 12.
Arm strength is gradually lost, making simple everyday activities we take for granted such as
cleaning teeth, turning pages of a book and giving a loved one a hug, impossible.
As the disease progresses to the heart and breathing muscles, the boys cannot breathe
unaided and their heart loses the ability to pump effectively. No parent should outlive their child, yet
this is the heartbreak that Duchenne parents face once their son (or rare daughter) is diagnosed.
Commendable Qld Support Schemes
Our members in Queensland have been delighted with both historic and recent programs that assist
them e.g. new support programs such as CAEATI, CAEP, CAPS and VOSS. With the improved
guidelines of these schemes, our families struggling with a child with a degenerative illness can
appreciate greater support and subsidies for: Wheelchair vans (essential for transporting a child in a
power wheelchair), mobility scooters (essential for preserving muscle in young still ambulatory boys)
and even MASS funded continence aids.
Families really struggle when purchasing a Van and were usually reliant on the skills of a social
worker or community group to find a charitable subsidy to be able to afford this essential
conveyance. In the past, Duchenne Foundation has supplied mobility scooters (the recommended
CTM HS125 ) as there was no funding available to assist families in this purchase. MontroseAccess
therapists however, tell us that this is no longer the case and a subsidy for transport outside the
home is now available, meaning that in Queensland at least, our foundation need not fund scooters
for disadvantaged families.
Of course the MASS scheme whilst prescriptive in choice of equipment listed, has been a lifesaver
for our children and professionals in seeking to assist them. Equipment such as lifts, shower chairs
and power chairs are essential for persons with a severe physical disability and these standards have
eased both financial and emotional burdens. The smallest item, like the periodic entitlement to a
new wheelchair cushion cover, makes the day-to-day management of a severe physical disability, so
much easier.
The Qld Health Department too has been persuaded by our seed funding for equipment for clinical
research in recent years, to supply life-saving equipment. Duchenne Foundation funded a trial of sip
mouthpiece portable ventilators for our young men in their late 20's who became housebound
throughout their days due to reliance upon their night-time bi-pap ventilation connected to mains
power. After purchasing 6 of these ventilators, which showed dramatic improvement in the
candidates in the study, the health department recognized the need to supply these machines in
addition to the bi-pap machine late last year.
Similar upcoming Research funded by Duchenne Foundation will investigate the benefits of power
wheelchairs with standing features for our newly non-ambulant population. This research will be
conducted in NSW but will include boys in other states. If efficacious, the research recommendations
will inform Enable, MASS etc. about the long-term physical and quality of life benefits in addition to
savings in ongoing health costs, by preventing cascading side-effects through supply of this mobility
device.
Specific pricing information/findings from our records and inquiries (please request receipts,
letters, invoices if required)
Wheechair subsidies based on very recent comparison between Enable NSW and MASS in Qld:
Comparing sets of documents regarding the supply of wheelchairs to separate patients over the
June/July period, we found that the NSW government contribution for a chair costing $35,692.24 is
$16, 103.00
This is a standing wheelchair, part of a clinical study we are gap-funding to show physical and QoL
improvements with the use of standing wheelchairs in freshly non-ambulatory boys. The gap
funding left to be covered by the patient is $19,589.24.
A 25 yr old in Qld during the same period was subsidized for a traditional power wheelchair with
elevated seat and tilt and space but no standing feature. The MASS funding amounted to $11,
185.80 ($7,000 for the powerdrive chair and $4185 for accessories) and the CAEATI funding for seat
elevation accessories amounting to $3,490.00 and thus the total government funding was $14,
675.80 leaving the patient a private funding bill of $1396.10. In this specific example the difference
between NSW and Qld subsidy for a traditional seated power chair is approx. $1500.
Purchase of cough assist machines: In USA, Philips sell these items for a little under $7,000 –
CMS/Medicare reimbursement is approximately $4850, which means that the machines cost a
family only $2000 out of pocket expense. Our most recent quote for this model in Australia is
$9,900 and there is no reimbursement for this respiratory device as it is not on the MASS tables.
Neuromuscular non-profits such as Duchenne Foundation have negotiated a discount per unit of
$1000 and are entitled to a free unit following a bulk purchase of 5 units. However, a family would
need to find $10,000 to own a cough assist for their child's use as compared to approx $2000 for
overseas families, which is much more conceivable. Philips have initiated a rental service for the E70
cough assist, based on a prescription from a medical expert. E70 Cough assists may be hired for $300
per month and the minimum rental period is 3 months in lieu of a bond.
If we consider another new model of cough assist, the Nippy Clearway from the UK, the current price
in the UK is 4,500 pounds which is at today's prices AUD $7690.70. Last October, we purchased a
Nippy from the Australian distributor for a Victorian district at: $9,487.50 plus Freight with 22.11%
discount to be $7,411.81. At the same time we supplied Children's Hospital at Westmead in Sydney
with a Nippy Clearway Cough Assist from the same Victorian distributor costing a total of $7,417.31.
Once again, with no subsidy, this device remains beyond the reach of our families and particularly
those children who are prone to chest infections and require constant use in their own homes.
Philips Respironics who supply the E70 cough assist have just re-introduced a rental deal for families
with a prescription form filled out by a therapist/doctor. It costs $300 a month for a guaranteed
period of 3mths to rent a cough assist maching. Even though there is no bond to pay, the rental
costs a minimuml $900.
The last items which would give patients with breathing difficulties greater flexibility and reduce
anxiety, are the ventilator accessories/consumables. For example periodic supply of an additional
external battery. For the ResMed VSIII, internal battery life away from mains power is 2 hours.
External battery life is only 8 hours and to have a second battery which can be charging while the
first battery is in use, is essential. Patients typically pay $520 for supply of a ResMed RPSII external
battery as of March, 2013. When it comes to night-time ventilation or v-pap, ResMed masks (at
least $250), mask straps and chin straps (approx $80) and replacement parts which last at most
18mths, are also very expensive and whilst idiosyncratic items, there should be a biannual subsidy to
help with replacement of accessories. Cough assist machines require that circuitry, masks and filters
be replaced regularly although these items are comparatively cheaper in relation to bi-pap sleep
accessories.
Recommendations
NB We regret that we are not privy to the regulatory or fiscal reasons for pricing disparity in the
examples we have cited and this limits our ability to make these types of recommendations.
1) That the subsidy for power wheelchairs in Queensland be both optimized and standardized for
two different chairs for use by children and also young adults affected by Duchenne - the standing
wheelchair for newly non-ambulant boys and the traditional power wheelchair without standing
feature for older boys or boys who are already contracted. We hope that the contribution of the
family should be minimised as much as possible in order to prevent personal deformity and familial
adversity. Based on the upcoming study we have commissioned, we believe that nationally, the
benefits of the standing wheelchair to boys (and rare girls) with Duchenne will amount to less
physical deformity resulting in less interventions and a considerable long-term saving in
medical/social costs. We anticipate that the benefits will include but not be limited to: increased
bone density, elimination of scoliosis, reduced contractures, better respiratory health,
improvements in smooth muscle functioning, raised well-being, greater social involvement and
sense of purpose, etc. Of course the power chair with standing feature (either Levo or Permobile)
will require a higher subsidy since these retail for over $30,000. Accessories are always available but
perhaps those considered non-essential for health and well-being should be borne by the child's
family.
2) Cough assist machines have historically been available for short-term loan via MontroseAccess
when chest infections or pneumonia make them an essential life-saver. However, our population is
spread out and we do need access to these machines, not solely for emergencies but so that our
children and youths can train on them and for want of physical exercise, use their breathing muscles
to achieve deep breaths regularly and maintain the elasticity of these muscles. Rental from the
supplier is very expensive at $300 per month. It is our recommendation that this machine be added
to the MASS list and a subsidy be made available so that families had an option to purchase a cough
assist machine if required.
3) That ventilation and secretion clearance accessories/consumables, whether day or night-time,
should be subsidised to a small extent in much the same way as continence aids are now subsidized.
Conclusion
We are grateful for the opportunity to share our experiences with the inquiry and would welcome
any questions or requests for follow-up information.
For more information about the research, care and treatment of Duchenne we recommend the
highly regarded, MontroseAccess manual/DVD - "Duchenne Muscular Dystrophy, a team approach
to management" (Updated 2012). For a more concise handbook, we distribute the 80 page
international resource "The Psychology of Duchenne" (Hendriksen, J)
Online Resources
1. Duchenne Foundation website - http://www.duchennefoundation.org.au Please request any of
our educational publications from our shop.
2. Duchenne Timeline - 6 min multimedia clinical snapshot of the lifespan
http://www.youtube.com/watch?v=AF4D4TyE9NM&list=UUY8FshsiRUDDT4I9BdxA65Q&index=11
3. Queensland patient perspectives of living with Duchenne - The Waiting Game - Duration 30 mins viewed in the following two parts on our youtube channel, albeit unlisted because it is not suitable
for affected families.
Part 1 http://youtu.be/fRGAQ6lk1Mk
Part 2 http://youtu.be/HBvNi4WeANc
4. Duchenne Foundation's Online Library/Information Portal https://www.diigo.com/user/Dmdfoundation