Cystic fibrosis is a lifelong disease that affects 1 in 2,500 Australian babies. Being a lifelong illness with no cure, management of cystic fibrosis is critical and many parents struggle financially to cover the cost of treatment and medication required for their child. As a result, families are often looking for cystic fibrosis financial assistance to provide support in caring for a loved one. This can be an overwhelming experience for a parent, adult or family to endure.
The Cost of Cystic Fibrosis in Australia
The cost of cystic fibrosis can be very expensive, particularly with the newly released drugs such as Kalydeco on the market that has a price tag of $300,000 per year. In fact, cystic fibrosis drugs and treatment are one of the world’s most expensive.
A study entitled ‘Understanding the costs of care for cystic fibrosis: an analysis by age and health state’ found that the average cost per patient annually can be from $10,151 for a mild case up to $33,691 for a severe case. In particular, Australian research has found that the annual cost on average is $22,336 for households with a child living with cystic fibrosis.
According to Cystic Fibrosis Australia, a leading non-profit supporting individuals living with cystic fibrosis, typical medical related expenses long term include:
– Medication: Taking multiple medications and supplements, which can be between 10 and 20 different types of medication each day.
– Medical Equipment: Use of specialized medical equipment to assist with taking medication, assistive equipment and home modifications.
– Physiotherapy: Physiotherapy each day is required from an early age all the way through life. This requires ongoing money to cover the excess that is not covered by medicare or health insurance.
– Fitness: Maintaining a high level of exercise and fitness is critical for individuals living with cystic fibrosis. Individuals may incur costs to assist with improving their motor skills such as physiotherapy and aqua aerobics.
– Nutritional supplements and Food: Eating a large amount of food and nutritional supplements to counteract poor absorption that is typically a problem for patients with cystic fibrosis. This can assist in increasing levels of energy in order to keep focus during schooling and/or work.
– Hospital Visits: Attending frequent and lengthy (10 – 14 day minimum) hospital visits, often multiple times per year. This means patients and their families will need to pay for accommodation, travel expenses, parking, day care (if they have other children to care for) and loss of income (if it requires the parent to take leave in order to make these visits).
4 Resources To Get Cystic Fibrosis Financial Assistance
Finding the right cystic fibrosis financial assistance can be important in order to be able to afford basic living items such as rent and food as well as to cover the medical bills associated with treating cystic fibrosis.
Here are four common ways families in Australia have found financial assistance.
1. Government Support
Disability services and financial assistance programs may be available to patients with cystic fibrosis through Centerlink. Many of the government programs and services offer financial assistance for ongoing medication costs, treatment and other related expenses such as wheelchairs and other aid equipment. This includes carer pension, disability pension and other forms of subsidized equipment and medication.
Patients must apply and be suitable candidates in order to receive financial assistance. This is a lengthy process that can often mean a lot of paper work and time consumption.
2. Non-Profit Organizations and Charities
There are a small number of non-profit organizations and charities that offer financial support specifically for patients with cystic fibrosis. Often, these non-profit organizations can provide cystic fibrosis resources and programs that can assist families in other ways.
One of the major restrictions that charities continuously face is the limiting resources and budget that can make providing access to their services to those in need more difficult. Many non-profit organizations work on a first come, first serve basis. As a result, families can find it difficult accessing financial assistance when they need it most.
Non-profits can also often have strict guidelines of who they are able to help, the amount of financial assistance a patient can receive and other requirements to be eligible for financial assistance.
One example is Cystic Fibrosis Australia. This organization provides limited to no financial assistance to cystic fibrosis families who are currently facing financial hardships. Patients and their families are only able to access the organization’s resources and programs which may decrease medical expenses. This organization is therefore not suitable for patients who require general financial assistance for medication, treatment or therapies.
Non-profit organizations can also limit the type of individual they are assisting.
For example, patients who are looking for financial assistance in relation to a lung transplant can seek assistance from the public medicare system. This is particularly opened for individuals who are uninsured.
3. Drug Programs
Pharmaceutical companies that manufacture drugs and medication for the management of cystic fibrosis can often run programs that offer discounts, co-payment options and free medication to eligible patients.
These programs are a great way for patients to receive medication, particularly if you are experiencing financial hardship. Many of these programs are limited to a number of patients or only provide assistance for a short period of time. For example, for free medication, patients can expect to receive medication for up to 3 months worth, while co-payment options can be available for 2 years.
For this reason, patients can use these programs to assist with short term goals and needs, while looking for more long term assistance for the future.
4. Co-Pay Card Programs
Co-pay card programs can help cystic fibrosis patients with the cost of monthly health insurance. These programs offer monthly insurance co-payments, which means individuals are able to access health coverage without the high cost premium that can be generally associated with it.
This can be particularly useful for individuals who are health insurance with a pre-existing condition such as cystic fibrosis. One example is called Genentech Access Solutions Co-Pay Card Program. Through this program, patients who are eligible can also receive help with the out-of-pocket costs for prescription drugs and medication.
Alternative Ways To Get Cystic Fibrosis Financial Assistance
1. Medical Crowdfunding
Although there are financial assistance programs and services that you may be eligible for, these options are often provide short term results or can be limiting in how you are able to use the financial support for your medical expenses. Tapping into innovative ways to access cystic fibrosis resources can provide better financial support for you and your family.
One new way families have been proactively raising funds for their loved one with cystic fibrosis is through medical crowdfunding.
Medical crowdfunding leverages your networks to crowd source donations and support for your cystic fibrosis medical expenses. It is a relatively new trend that continues to grow in the United States, where more patients and their families have used in order to get financial assistance.
Medical crowdfunding offers patients with cystic fibrosis the opportunity to raise funds they require for their medical treatment within a short period of time. Typically a fundraiser ca run for 30 to 60 days with results far exceeding any other form of financial support available.
Another benefit of medical crowdfunding is that it is completely free to use on PeoplePledge. Here you will be able to create a fundraiser and run it for months with no charge or administration cost.
Medical crowdfunding heavily relies on a individual’s contacts, networks and outside support. For individuals who have small networks, limiting amount of friends or small families, it can be difficult to raise the funds required.
2. Fundraising Events
Alternatively, looking into creating fundraising events that coincide with your online medical crowdfunding page can also help boost the amount of donations you can receive from the public or your local community.
Fundraising events such as raffles, dinners, auctions and selling merchandise can help increase attraction to your fundraiser but also means more potential to how much you are able to raise.
3. Loans And Credit Card Debt
One fast way to resolve medical debt or to pay for much needed medical treatment and medication is the use of loans and credit cards. Many families with a loved one who has cystic fibrosis have opted to pay for their medical treatment through loans and credit card debt. This can be a dangerous situation to be in as studies have shown that families can find it even more difficult to get out of.
Not only will unpaid loans and credit card debt impact your ability to access future credit, it can also mean you will have a negative credit score.
Having medical debt and using loans and credit cards to pay for medical treatment can result in high interest that is difficult to overcome. As a result, many families can resort to filing for medical bankruptcy to clean the slate. This can make it difficult to receive cystic fibrosis financial assistance in the future.
1) Paying twice: questions over high cost of cystic fibrosis drug developed with charitable funding: http://www.bmj.com/content/348/bmj.g1445
2) Understanding the costs of care for cystic fibrosis: an analysis by age and health state: http://www.ncbi.nlm.nih.gov/pubmed/23538187
3) Cystic Fibrosis (CF): http://www.lung.org/assets/documents/publications/solddc-chapters/cf.pdf
4) Cost of Living With Cystic Fibrosis in Australia: http://peoplepledge.com.au/blog/cost-of-living-with-cystic-fibrosis-in-australia-an-overview-of-the-out-of-pocket-medical-expenses-that-australians-are-paying-each-year/
5) Cystic Fibrosis Quick Facts: http://www.cysticfibrosis.org.au/qld/quick_facts
6) Cystic Fibrosis Australia 2009 Data Registry Results: https://www.mja.com.au/journal/2011/195/7/cystic-fibrosis-australia-2009-results-data-registry