Cystic fibrosis is a lifelong disease that affects 30,000 Americans. Each year, there are an additional 1000 children and babies that are diagnosed with cystic fibrosis.
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. This can be an overwhelming experience for a parent, adult or family to endure.
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.
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 the United States have found financial assistance.
1. Government Support
Disability services and financial assistance programs may be available to patients with cystic fibrosis. 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.
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.
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 Katie’s Kause for Cystic Fibrosis. This organization provides limited financial assistance to cystic fibrosis families who are currently facing financial hardships. Patients and their families are only able to access the organization’s financial assistance in the Oregon and Washington area.
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 National Transplant Assistance Fund. This is particularly opened for individuals who are uninsured. This organization is therefore not suitable for patients who require general financial assistance for medication, treatment or therapies.
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
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.
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.
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.
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.
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
More Cystic Fibrosis Financial Assistance Resources
- 7 ways to reduce the cost of your cystic fibrosis medications Cystic fibrosis is a life-threatening genetic disease that affects 30,000 people in the United States. It is a long term disease, in which individuals who may be diagnosed from a young age will require substantial treatment and care. Majority of the costs comes from cystic fibrosis medications. It is important to maintain health and well-being ... Read more