Encouraging news

[john0084]

Yesterday's review has lifted my hopes of changing drugs from hydroxy to ruxolinib. My bloods are all within range but my itch is still bothering me. So my nurse has booked me a consultation with a view to switch. This might happen in the next 3 to 4 months. The nurse kindly reminded its not a done deal but a possibility. Sometimes I love the nhs!

[hunter5582]

That is encouraging news. Hopefully, you will be able to switch to RUX if that is your preference. It is worth noting that assertive patients receive higher quality care. Passive patients do not. If you have determined that the risk/benefit profile of RUX is better in your case than HU then it is your prerogative to advocate for your treatment of choice. The question is not "Can I?" The question is better phrased as "How do we make this happen?"

When I determined that Besremi was the better option my doctor agreed. The insurance company denied the request and my doctor could not get the decision overturned. I refused to give up. I was persistent, sought the information I needed and filed my own appeal. I was able to get the denial overturned. I succeeded by being persistent, understanding how the system works, and refusing to take no for an answer.

Wishing you success in pursuing whatever option you determine to be in your best interests.

[john0084 in reply to hunter5582]

Thanks hunter, wise words indeed. I will try being more assertive with the doc when the time comes.

[hunter5582 in reply to john0084]

Shared decision making is a fundamental aspect of quality medical care. Doctors and patients have an equal voice in making decisions. It is most effective to go prepared with a written agenda of issues and questions. Do your research on the risk/benefit profile of each medication choice. Remain aware that your doctor works in a system that endeavors to contain costs and is held accountable by the system. The doctor has to make the case that the benefits are worth the cost of a more expensive choice. Hydroxycarbamide cost = $25.00/month. Ruxolitinib cost = $14,300/month. Little wonder that accessing ruxolitinib is more difficult. It can help to work collaboratively when we understand the contect of the world the doctor works in.

Wishing you all the best as you move forward.