It's Good Deed Day! Fill, click, send! Help cancer patients become vaccinated. We called the health departments in all 50 states!

[bkoffman]

It's Good Deed Day! Fill, click, send! Help the susceptible become vaccinated. Throughout the pandemic we have felt helpless, but now there is something we can do to help move patients to the front of the COVID-19 vaccine line. Our nifty letter asking your state's health department to move cancer patients to the front of the vaccine line is "fill, click, send!" The life you save may be your own. Thank you! CLL Society is looking out for you! cllsociety.org/covid-19-vac...

[MrIvyLeague]

Thanks again for your effort and hard work. As you say on your great website cllsociety.org/ "We are all in this together."

[Jonquiljo]

Perhaps there needs to be a Federal form (addressed to HHS) released after Wednesday (Jan. 20th). Expectations are that the “new government” will take a federally centralized approach to vaccines and distribution.

[bkoffman CLL CURE Hero in reply to Jonquiljo]

Things are changing fast. We will see what happens. I have organized a meeting on Tuesday with LLS and LRF and others to respond at the federal level

[Jonquiljo in reply to bkoffman]

Well, if there will be new heads of the CDC and HHS - things will change. In order to vaccinate cancer patients (or even over 65's) - it will require a totally different response than we have now. In fact, most of the players will change.

There will have to be Federal intervention or we will be vaccinating into 2022!

Since the original (lame)"recommended guidelines" for distribution came from the CDC - it will take someone to force them to use some common sense - and think a little bit. Cancer patients should take priority. How they missed that one is beyond me!

But the new players won't be at their desks - and unconfirmed at that- until Jan 21. Until then, we need to assume that no one is home. Perhaps send things to the "transition team"?

[dvd1955]

I hate to be a downer on this, but every group that thinks they are special is doing this. In Indiana, the school teachers are fighting to be put near the top of the list. Some say those that must go to work should be put ahead of the elderly because they can't stay at home like we retired people can. And on and on. I think the government realizes they would open the floodgates if they started letting special groups jump the line, thus the rule, at least in my state, is to go to healthcare workers first, then first responders, then as more vaccines become available, steadily lower eligibility age. Right now in Indiana it is 70 and over.

[Jonquiljo in reply to dvd1955]

That's why it has to be federally mandated. States and counties should not be calling the shots on things like that.

In fact, the biggest problem is that there is such a piecemeal approach to vaccinating people that we are one of the worst performers - certainly considering how much money we have paid and set aside for this.

In California, we are 49th of all the states. Why? Because our state government doesn't have what it takes to do the job. Each of around 50 counties is doing their own thing and it's nuts. Some make it 75, some 65 - even though the Governor made it 65. Some "special groups" are making it in - some not. It depends where.

We need a hard line set of federal rules (along with assistance) to make it happen in a big way. The original CDC recommendations for vaccination order were totally (stupid and) difficult to follow. States are not following them anyway. It needs to be simple and straightforward. That's the only way to vaccinate people as fast as we can get the vaccines.

We (the USA) have the worst percentage of COVID infections. We can't seem to handle this pandemic - mainly because we keep sending responsibilities down the line to states, counties, etc. That isn't working.

[Justasheet1 in reply to Jonquiljo]

Hey Jon, are you feeling okay? Are you over your cold?Jeff

[Jonquiljo in reply to Justasheet1]

Hi Jeff -- It wasn't a cold. It responded to antibiotics and I am fine now. I guess it was something from outside and it got a hold of me. It makes sense as I was outside a lot with our new dogs and I must have gotten run down and chilled in the wet weather. Thanks for asking. Jon

[HopeME in reply to Jonquiljo]

It needs to simply be age based with input from doctors on illnesses. Everyone is equal when measured this way. We need to get away from trying to evaluate which group is more important relative to the next.

[Jonquiljo in reply to HopeME]

Actually you make the most sense. When I was talking to my CLL Dr. about a month ago or so - he said that Dr's would have nothing to do with recommending people for the vaccinations (i.e. - say I have CLL so I could get in faster). He said the only thing that could be done was to go by age or demographic group (age makes most sense) - and just vaccinate people one after another.

I hear that there is a lot of vaccine wasted with people trying too hard to follow the rules. If there are no health care workers around - they try to call more in -- and it never works. Eventually they spend all that time wasted and end up throwing away doses.

By age would be simple and best - you show them a drivers license, etc. I can see how badly it is going here in California. Too many rules and everyone has a different system, etc. It's a mess. I think when we have a new federal administration on Wednesday this will all get better.

[bkoffman CLL CURE Hero in reply to HopeME]

It's not about importance. We are all worthy and created equal by our maker, but it is about who is most at risk and where would there be the most benefit for the recipient and the community. We score way ahead on those measures compared to others ahead of us in the tiering. Our mortality rate is among the very highest and the virus has been shown to mutate more in us to due to our inability to throw if off quickly, putting everyone at risk. Simple is good too.

[HopeME in reply to bkoffman]

I agree with with what you are trying to achieve and I am deeply appreciative for your efforts. As someone with middle school children I am acutely aware of the risks I face day in and day out as an unvaccinated and previously treated SLL patient. To say I am playing Russian Roulette isn’t too far from the truth.

The point I was trying to make is the complexity added to the roll out process to achieve fairness by first the CDC and now certain states such as NY is well intentioned but misguided. For example, NY’s attempt at fairness by prioritizing one group over the other and promising to prosecute those who “cut the line” has ground their distribution efforts to a halt. Surprisingly, states including Florida and North Dakota who did a dismal job with the pandemic upfront by fighting mask mandates and not closing certain businesses are now leading in vaccination distribution per capita. Israel also has achieved amazing results vaccinating its population. What is a common element of success in these far flung places? Prioritizing by age after inoculating healthcare workers, nursing home residents, etc. and taking into account illnesses such as cancer. Simpler is better!

There was a poster here a couple weeks back who mentioned that she had received her first vaccination. I questioned how had she had done this so quickly and she replied that she was an American Indian so she had been given priority. She was also a CLL patient and a front line social worker. I would have prioritized her categories as cancer patient, social worker and finally American Indian. Others could come to completely different priorities. My point is approaching vaccinations in this way pits one group against another and slows things down.

It is indisputable that older individuals are the most impacted by this virus so let’s start there and keep our approach simple to accelerate the roll out.

Best,

Mark

[PrincessUnikitty]

Just sent this in Maine! Thank you!

[Phil4-13]

😊 Wonderful for us, contacting every state. Sandra

[Cookiegrandma]

Sent mine in...the least we can do is try!!!

[Ksch]

So appreciate the tremendous effort to help those with CLL to utilize this letter to aid us in having a voice on importance of receiving our shots sooner than later. Submitted mine today, hopefully will be considered in next roll out. Thank-you Dr Hoffman! Hanging tight in the big easy ⚜️

[SofiaDeo]

How can we advocate for in-home caregivers of high risk patients be done ahead of the general public? Those that work in formal nursing home were prioritized.

[bkoffman CLL CURE Hero in reply to SofiaDeo]

Write the decision makers. NCCN just published some guidelines that might help.