Radicava and hospice?

[DFM20]

We have received conflicting information about whether my PALS would have to discontinue infusions of Radicava to enroll in hospice. Is there a definitive rule?

 

[ReginaS]

it depends on the hospice service. They write their own contracts. You can ask if they support it. The hospice service which we used did a fabulous job supporting us for getting approval from their director for trilogy, cough assist and suction machine. My guess is that they would have classified Radicava as a life prolonging procedure and they might not have paid for it. It is a guess. People can pay out of pocket when they want something that hospice does not approve...I assume it might get expensive.

 

[KarenNWendyn]

Another thing to consider if for some reason hospice does not approve it — Radicava was found to be most effective at slowing progression when given to PALS in the early stages of ALS, i.e. those with higher functional scores.

I’m assuming if your PALS qualifies for hospice that her respiratory status and other functional abilities have declined a bit since starting Radicava. So at this point, the benefits of continuing it are unclear, though it may not be causing any harm.

 

[DFM20]

Another thing to consider if for some reason hospice does not approve it — Radicava was found to be most effective at slowing progression when given to PALS in the early stages of ALS, i.e. those with higher functional scores.

I’m assuming if your PALS qualifies for hospice that her respiratory status and other functional abilities have declined a bit since starting Radicava. So at this point, the benefits of continuing it are unclear, though it may not be causing any harm.

Yes, it is hard to gauge the effects of the Radicava. That’s one of the most frustrating aspects. She has been taking it for 18 months. People ask if it’s helping, but when the expected effect is not stopping or reversing progression but only slowing it, how can you tell? The ALS has progressed during those 18 months, but would it have progressed more without Radicava? We have no way of knowing.
Dave

 

[KarenNWendyn]

I totally agree.

 

[Nikki J]

It is really hard to think about stopping when you don’t know. This isn’t the same situation because she presumably started it when she was early stage but there was a study that looked specifically at people who were Japanese stage 3 ( requiring assistance for hygiene, dressing etc) that found no benefit with Radicava https://www.tandfonline.com/doi/full/10.1080/21678421.2017.1361441

My understanding is that hospice has to pay for everything associated with your hospice diagnosis ( medicare would pay for high blood pressure for example but hospice pays for ALS). They get a set amount per month to cover the costs of care, equipment and meds

 

[CtWayne]

Yes, it is hard to gauge the effects of the Radicava. That’s one of the most frustrating aspects. She has been taking it for 18 months. People ask if it’s helping, but when the expected effect is not stopping or reversing progression but only slowing it, how can you tell? The ALS has progressed during those 18 months, but would it have progressed more without Radicava? We have no way of knowing.
Dave

D we are in the same boat. Mary decided to quit Radicava after 19 months when she progressed to basically quadriplegic and cough assist and Bi-pap. getting in the car to infusions 1 hr away here was more difficult than assumed benefit.

 

[DFM20]

D we are in the same boat. Mary decided to quit Radicava after 19 months when she progressed to basically quadriplegic and cough assist and Bi-pap. getting in the car to infusions 1 hr away here was more difficult than assumed benefit.

D we are in the same boat. Mary decided to quit Radicava after 19 months when she progressed to basically quadriplegic and cough assist and Bi-pap. getting in the car to infusions 1 hr away here was more difficult than assumed benefit.

I understand. We were only 20 minutes from the infusion center, but the trips just became too taxing for her. For the last three months we have been doing home infusions.

 

[lgelb]

I don't see hospice paying for Radicava. It is considered "curative" rather than "palliative," and they don't get enough money to cover the costs or deal with the workload. There is a pilot program in Medicare hospice for curative + palliative treatment, but PALS aren't eligible and few hospices are participating anyway.

Treatments have placebo effects, so if someone is comfortable using Radicava and is not ready to stop, they are not ready for the hospice mindset. If/when a PALS enters hospice, a different set of goals is in play. Some hospices and health systems offer "palliative care" as a bridge between "normal care" and hospice.

But all should send a nurse to consult with you prior to hospice enrollment, so you can assure each other that the goals match up. Never feel pressured to enroll just because someone writes an order or suggests it.

Best,
Laurie

 

[DFM20]

Thanks, everyone for your suggestions and information. As a new member, this was my first question to the forum. It was heartening to get such thoughtful replies so quickly.