News of interest to ET patients

Pluto was kicked out of the list of planets in our solar system
the same year ET was reclassified as a cancer? Coincidence?

From time to time I like to post things I've read that relate to me as an ET patient. So here are some recent articles that might interest you, too.

Having trouble paying for meds? I learned from a fellow MPN patient about GoodDays, an organization comprised mostly of pharmaceutical companies, that will help patients like us with prescription drug costs.


Right now, all MPNs are on GoodDays's list of covered diseases, and commonly prescribed ET medications are listed in their formulary, including anagrelide (Agrylin), hydroxyurea (Hydrea), (ruloxitinib) Jakafi, and pegylated interferon (Pegasys).

Should Americans have to give up genetic info to their employers or pay more for their health care benefits? That's a what HR Bill 1313, Preserving Employee Wellness Programs Act, might do, as reported in the Washington Post.



While the Genetic Information Nondiscrimination Act of 2008 protects you from being being forced to disclose genetic information, such as your genetic marker for ET, the new bill would allow employers to charge you up to 30 percent more for your health care package if you choose to keep that info private.

The bill has passed the House of Reps and is currently in committee. If it clears committee, it will go to the Senate, so if you have thoughts on this, share them with your senators. The National Organization on Rare Diseases (NORD) has issued a statement against the bill.

Are you a Vietnam vet with an MPN? MPN Advocacy & Education International wants to hear from you. The group is trying to get Agent Orange on the presumptive list of substances that cause MPNs, which would qualify Vietnam vets to be able to be treated through the VA. The questionnaire is here.

Can you benefit from immunotherapy against cancers? Not right now. That rather depressing news comes from Stat, a journal that covers medical issues.

While some truly astounding remissions and cures have occurred as a result of immunotherapy, fewer than 10 percent of those suffering from cancer today can benefit from current approved treatments. For many types of cancers, there is no approved immunotherapy ... or immunotherapy just doesn't work. Work is underway on immunotherapy for CML and MPNs, but no breakthroughs that I know of.

Is Pluto a planet? Is ET a cancer? This is just for fun, really, but the same year that the World Health Organization decided that ET was a cancer, astronomers decided to kick Pluto out of the list of planets in our solar system. Coincidence? Maybe.

But I grew up in the 1960s and '70s, and for me, Pluto will always be the by-God last last planet in our solar system. And just as I (and apparently many astronomers) have a hard time letting go of the "planet Pluto" idea, lots of hematologists still have a hard time accepting that ET is a cancer. Does it matter? I don't know. Your doctor is probably going to treat and monitor your ET the same whether he thinks it's a cancer or not.

But I can't help wondering if doctors who take ET seriously as cancers may be less dismissive of your fears, concerns, and more likely to be interested in your treatment.

Be well!

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