If you are a parent of a chronically ill child, there are a million things running through your head every single day—day in—and day out.
Enter the parents of a sweet little Belgian boy named Logan, who a member on RareConnect explains, was born with a Cryopyrin-Associated Autoinflammatory Syndrome (CAPS) disease, Muckle Wells Syndrome (MWS).
Considered a very rare disease, MWS, is difficult to not only treat but difficult to merely obtain the treatment. Apparently, Belgium doesn’t quite have its act together because the government has not approved medications for MWS.
So what happens to families living in Belgium and other countries who can’t access or pay for life-saving drugs needed for their loved ones? Families like Logan’s are driving across the border to other nearby countries to obtain treatment. But sadly, most families can’t afford the out-of-pocket costs to treat rare diseases which can easily bankrupt them after just one treatment.
Thankfully, not-for-profit foundations are popping up—and scrambling to help families in dire need to not only receive medications for rare diseases, they’re helping to lobby governments to change their policies. Right on!
But what most people don’t realize, however, is that the vast majority of pharmaceutical and biotech companies who make and market treatments for rare diseases offer financial assistance to patients and/or their families who qualify. And yes, sometimes the drugs are actually free!
So here’s what we advise:
1. Talk to your doctor about approved treatments no matter where you live.
2. Visit trusted websites for disease and treatment information.
3. If you can’t find the drug or afford it, contact the biotech and pharmaceutical companies who make the drugs—directly—and ask about financial assistance options.
Time and time again, pharmaceutical companies have generously helped patients in need, so it’s important to research your options after a diagnosis of a serious or rare disease. Your life or the life of your loved one depends on it.
