Bone Cancer - an orphan disease

[Mary]

According to the Mayo Clinic, only 2,000 new cases of bone cancer are diagnosed each year. Of those, 35% are osteosarcoma, 25% are chondrosarcoma, and 10% are ewing's sarcoma.

Here is the definition of an orphan diseases from medterms.com:

A disease which has not been "adopted" by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it. An orphan disease may be:

1. A rare disease. According to US criteria, an orphan disease is one that affects fewer than 200,000 people. (There are more than 5,000 such rare disorders.)
2. A common disease that has been ignored (such as tuberculosis, cholera, typhoid, and malaria) because it is far more prevalent in developing countries than in the developed world.

The US Orphan Drug Act of 1983 offered tax incentives on clinical trials and 7 years of marketing exclusivity for drugs developed for conditions that occur only rarely in the US. Since then, more than 200 orphan drugs have been approved by the US Food and Drug Administration (FDA) and are on the market. Similar legislation has been adopted in Japan and Australia.

In the year 2000, the European Union adopted "orphan medicinal products" legislation modeled on the US law, but including tropical diseases and other disorders prevalent only in the developing world. The EU law provides for 10 years of marketing exclusivity, but no tax incentives (because there is no centralized EU taxation system).

[Jo Ann]

I hate the word RARE or Orphan disease as it is listed here. Because it means that even physicians who specialize in cancer don't see many cases... I urge all patient's with bone cancer to get a second opinion at a major sarcoma center.. However it is nice to read that someone is trying to help those with bone cancer.. It is HOPE.. It is progress..

Thanks for sharing this Mary,

Jo Ann

[Mike]

It is very sad, but very true about the pharmaceutical manufacturers not giving "orphan" diseases the attention they deserve. I work for the 2nd largest pharmaceutical company in the world and have asked many times why they develop the meds they do. They'll tell you that they want to develop drugs that will have the most impact for the most people. This is a good argument, but I know that they are driven by their bottom line and their commitment to the shareholders. Don't get me wrong, I love my job and what I do, but I often feel like I work for "The Man". Hopefully one day in the very near future, someone higher up in the corporate food-chain than I am will see that there is value in our little "rare" types of bone cancer and actually throw some R&D money at it.

....Here's hoping....

[Allan]

This one of the sad facts we all live with. If there is no(high rate of return) the pharasuitacle(sp) companies aren't that interested in looking for drugs that will help. Sadly there is no easy answer to this. All we can hope is that by accident they will find what all the bone cancer folks so desperately need.

[Mary]

An excellent article written years ago that still applies to us today:

Orphan Diseases Leave Patients on Their Own

[Cari]

I don't like being an orphan!