What Will it Cost?
The Costs
Naturally, such a rarely performed surgery is quite expensive.
Fortunately, the surgical costs in Barcelona are a small fraction of the cost of the same procedures in the USA. The average price for a Craniocervical Fusion for Craniocervical Instability for an Ehlers Danlos patient in the USA is around US$1 000 000. Yes, one million US dollars. That is for one of the procedures required by Julie. This naturally does not include flights, accommodation, living expenses, rehabilitation, aftercare, and incidentals. The option of surgery in the USA therefore was never an option for Julie. Fortunately, Dr Gilete and his team do not charge these prices and their exemplary knowledge, research, and experience with EDS patients and their special needs in surgery and aftercare make them the very best option for Julie’s unique set of conditions.
The Quotes
€117,000
AUD$187,000
The Hospital
The quote for three surgeries, all related testing, hospital stay, ICU stay, surgical insurance, medications, follow up imaging, consultations, and aftercare medications.
This price has been quoted assuming that the three surgeries will be performed on the same day thus reducing the need for three expensive hospital stays with accompanying testing, medications, and etc, not to forget three times experiencing post surgical pain and recovery.
This may change if Dr Gilete deems that the results will be improved by performing these surgeries separately.
A breakdown of the quote is available here.
There is a very high chance that further surgery or a more complex surgery is required. Additional funds will be added to the quotes to cover this very real possibility.
AUD$11 000
The Transport
Julie must be able to lay flat while travelling to Barcelona from Australia. This has proved to be a difficult and expensive issue.
Quotes were gained for fully flat seats on commercial flights. The cheapest option was a first class flat bed chair. The cheapest return price was AUD$23,000. The seats in business class, although a little cheaper, are not suitable for the spinal support needed by Julie. This option was deemed far too expensive. other options were investigated.
After consulting with some former patients of Dr Gilete, it was discovered that they took medical flights. They were collected from their home, taken to a medically equipped plane, flown to Barcelona, and then transferred to the Médico Centro Teknon Hospital in Barcelona. Although these flights were much shorter than the flight from Australia, a quote was requested. The price was absolutely unacceptable despite the benefits of personal care. The quote for a one way medical flight with private medically equipped and staffed plane from Sydney to Barcelona (home-plane-hospital transfers included) is US$290,000 (AUD$400, 787). Suddenly the first class seat sounded like a bargain!
Julie was offered a special price on a first class seat previously quoted at AUD$34,000, by the wonderful Marcus Sills at “I Only Fly First Class”. He has offered this return flight for AUD$11,000. I can’t thank him enough for his kindness. This price may change depending on the time of departure.
€28,800
€1800 per month
+Bond of 2 months
(absolute max)
Accommodation
Barcelona has extremely high rental prices and is more expensive than even Sydney which is famous for high costs of housing and rental prices. Much research has been done to find an ideal location finding a balance between price, accessibility, proximity to facilities, and transport links/proximity to the hospital, and meeting recovery and rehabilitation requirements.
Due to the recovery and rehabilitation requirements after her surgeries, Julie has to find accommodation with particular attributes. For the first 12 months after surgery, Julie is limited to lifting a mere 2 kilograms. This means that carrying groceries, or other items up stairs is impossible. Therefore an apartment on the ground floor or one with no steps (to allow for a wheeled basket or trolley to be used to carry things when her accompanying person is not available) and an elevator is required. Close proximity to a market is also necessary.
Another requirement is a second bedroom to accommodate her accompanying person. It is a stipulation of surgical protocol that patients be accompanied by a carer. This person must remain with them full time for the first 48 hours after surgery and then, for the majority of the day, for at least the first two weeks after being discharged from hospital. As Julie will not be able to return to Australia at that time, she will require an accompanying person for the next few months. The apartment also must be furnished.
Listings via English speaking agents are notoriously more expensive than those in Spanish and Catalan. Therefore Julie has been searching only in Spanish and Catalan listings.
The average estate agents, as in other countries, require a security deposit of 1 or 2 months (depending on the agent) and a 1 month service fee. A swimming pool within the complex or nearby would remove the need to pay for the use of expensive rehabilitation services but is not mandatory.
Research shows that €1800 per month absolute maximum would provide all of these necessities. Utilities are usually but not always included. This would remove the additional costs of rehabilitation a centre and much more thus reducing the overall cost per month.
The comparison to assisted residential rehabilitation is €2000 per week. This price can not be justified, especially when fundraising is the sole source of financing. Julie has friends in the vicinity who will assist her in her rehabilitation exercises. A good thing to reduce the budget, to enjoy spending time with old friends, and encourage positivity in what will be an extremely challenging recovery.
Julie’s support connections who have had some of her procedures have highly recommended being near the hospital for quite some time after the surgery. As the majority of patients reside in Europe, they are relatively close to the hospital should they require care for any post surgical issues. Australia is at an uncomfortably great distance should Julie require assistance.
€650
AUD$1000
Genetic Testing
Genetic testing is required for the following reasons:
To determine the precise type of EDS which Julie has.
To allow Dr Gilete to plan Julie’s surgery in accordance with the specific requirements of the type of EDS Julie has.
To allow for anaesthetic planning and post operative pain management as EDS has unique needs and can vary between types.
To plan for possible complications involved with some types of EDS
$3900
20 sessions at $195 per session
Mandatory PTSD Therapy
Through much observation and study, Dr Gilete and his specialised staff have discovered that the extended periods of time which EDS, CCI, AAI, TCS patients endure to gain a diagnosis entails a great deal of trauma. This trauma is deep and severe after being disbelieved and ridiculed by medical staff and others for decades.
They have also found that patients who have not resolved their PTSD do not recover well nor get optimal results from surgery.
Therefore Dr Gilete now requires all patients who have PTSD from adverse negative experiences with being diagnosed to undergo mandatory PTSD therapy with a psychologist or psychiatrist. This will ensure the best possible outcome from surgery.
$3177
Travel Insurance covering a preexisting condition
Surgical and comorbidity complications are covered by insurance included in the hospital fees. Travel insurance for all other travel related possibilities is required. This includes repatriation of a body in the rare chance that surgery is not successful. Quote is HERE
€36, 500
Visa Requirements
The Embassy of Spain has advised Julie to apply for a Temporary Resident Visa. This is due to the uncertainty of being able to return to Australia within 12 months because of COVID-19 restrictions limiting the number of people who can return to Australia during the pandemic.
The Australian government will not issue permission to leave Australia if your stay away is less than three months duration.
The regular Shengen tourist visa (90 days) is what would usually be required. As there is advance knowledge of the restrictions, the embassy requires that this be taken into consideration and that an extension due to inability to return may not be granted causing daily fines until a return place in the queue for returning comes available.
There is no medical treatment visa for Spain or the Shengen area.
The visa requires that the applicant can support themselves during their stay and to make contributions to pay for national medical insurance (similar to the Medicare levy). The minimum amount they require the applicant to possess is €25,816.20. It is advised unofficially to allow €100 per day. this would therefore be, for 12 months, €36, 500. This amount must be available in the bank account of the visa holder as assurity.
€36,500
€100 per day (average wage)
Living expenses
As mentioned in the visa requirements section, Spanish Immigration requires the applicant to have a minimum of €25,816.20 per year of stay. It is advised unofficially to allow €100 per day. this would therefore be, for 12 months, €36, 500.
AUD$3000
Accompanying Person Airfare
Dr Gilete’s team requires that the surgical patient is accompanied by a friend or family member. This person must remain in the hospital with the patient while they are in the intensive care unit. For Julie, this will be for two days. They are then required to attend the hospital for varying amounts of time over the in-ward recovery time and then for two weeks for the majority of each day after discharge. The time after this is reduced as Julie begins to gain a little mobility but assistance is still required with most tasks.
AUD$300,000
As a minimum
The Goal
This is an estimate of the minimum amount to ensure that all bills are covered and that any surprise bills can be at least partially covered.
Julie has researched deeply to find the options which are not only the best for her best outcome, but which are the most cost effective. As this is being crowd funded, Julie wants to keep the amount required to a minimum.
Any extra amounts would allow Julie to have further care in her rehabilitation and recovery. The estimated time for surgical recovery is approximately 12 months. During that time she can’t lift more than 2kg so assistance over that would make recovery easier and more comfortable.
Funds will be used wisely and for gaining the best possible outcome to end a lifetime of pain and illness.
