Wrong PET Scan

concerned_sister

For context, let me post a few paragraphs that I shared back on April 30th (with minor editing):

… The dr then turned to me, noted that I had been quiet, and what could I add. I talked about DB's memory in terms of word finding and getting stuck mid sentence. I confirmed that this had been better since the Aricept, but it is still present.

The doctor recommended upping his dose from 5 mg to 10 mg. He asked about current side affects (none reported when asked about each specifically). He was warned that he may experience them. DB noted he could use up his 5mg by taking 2 in the evening before filling the 10 mg perscription. The dr endorsed this plan. The dr talked about the Leqembi (Lecanemab (Leqembi®) is an antibody intravenous (IV) infusion therapy that targets and removes beta-amyloid from the brain) infusions. He said it was FDA approved, and had good results in over 50%, but the downsides were that it costs in the range of 25K annually, and a potential side affect is brain bleeds. DB didn't like that with the risk/reward and the cost. He talked about a DNA test that would show whether you fell into the percentage more likely to have this side affect (DNA test for APOE epsilon 4). If you had that, with the higher risk that would be off the table. He also talked about a PET Scan and blook tests to look for Amyloid. The infusion works to remove the Amyloid, so this would not be worth pursuing if this were not present. (We returned to this discussion later.)…

• As a follow-up to that, M1 remarked he thought it was unlikely that the VA would pay for the PET Scan.
• DB had a PET scan a little more than a week ago at the VA. The private practice neurologist had ordered it, and we requested the VA fulfill the order when DB started to go though them for care.
• The neurologist had requested "Amyloid Scan" and had x'd "Amyvid"
• I got a call today that the local VA office had the results and they would be faxing them to the original neurologist. In response to my question, they said I could come get a hard copy.
• When I read the report it discussed differentiation with Frontal Temporal Dementia, but not a word about Amyloid. In addition to our hope this test would firm up the diagnosis, it was needed to see if DB was a candidate for the Leqembi the neurologist recommended.
• I asked the VA if they had the order for the test. My memory was that it was to check for Amyloid, as I knew that part of the promise of Leqembi was addressing the build-up of Amyloid.
• They didn't have a copy, I had to go get it from the Neurologist.
• I got the copy, and it was as I remembered.
• Returned to VA. In conversation with the nurse, I was basically told the PET scan that differentiates with FTD is the only one they do, therefore it was the one they ordered.
• UGH!
• I was urged to schedule it outside the V.A.

I've scheduled this, but they warned us to expect a price tag of around $4K.

H1235

Your brother and sil are very lucky to have you as an advocate! The healthcare system is so complicated and at times inept.

concerned_sister

Thank you. I'm glad I took the time to go get the results.

A little more back story: A couple of nights ago I heard from an (out of state) friend I hadn't spoken to in a number of months. When exchanging stories she talked about working in a Leqembi infusion center. Part of her role is submitting the correct documentation for Medicare reimbursement.

This blew my mind. (A) That her knowledge was so relevant and (B) that Medicare could possibly cover (most of) the cost. One big downside for considering this treatment was cost.

This led to a chain of discussions with my siblings before approaching DB. DB is still working, though not at full capacity. If he were to take disability retirement, go on SSDI, he would then be Medicare eligible. After getting their feedback I approached DB and his wife. She initially had been eager for DB to look into this. I was more hesitant re side affects, but after talking to friend I became comfortable that they were doing a good job prescreening those more likely to have side affects.

DB was ready to pursue disability if the tests showed he was a candidate to benefit from the infusion.

So I was immersed in all this the last few days trying to make sure family was up to speed on the info needed and the decisions to be made.

So...with all that I was hyper aware of the type of test we were waiting on.

harshedbuzz

@concerned_sister

Ugh. I would confirm the timeline of Medicare kicking in after qualifying for SSDI. I believe there is a 24-month delay in qualifying, except for ALS and end-stage renal disease. SSDI doesn't "start" until 5 calendar months after qualifying, so the Medicare can effectively be 29-months out.

How Does Medicare Work With SSDI? (aarp.org)

PET scans can be expensive out-of-pocket though prices can really vary. I think a lumbar puncture can also be used to determine the presence of amyloid. Could that be an option if the co-pay is easier for them?

HB

concerned_sister

HB thanks for the information. Based on the URL it seems that info was as of 2022.

Though the time frame may have changed, the point of becoming familiar with all those dates and coordinating is important.

I will have to go back and check my sources. My understanding is that if ALZ is the reason for disability, there is an expedited schedule. I'm thinking I read between 90 and 180 days. The CELA had provided us names of a few disability lawyers. My understanding is there was a recent change the Medicare is 60 days after that. On the last point I remember that being discussed with the CELA. It had been 24 months which would have been moot as he will turn 65 in the next 24 months. The lawyer corrected me on that point.

I was talking to my uncle, and he pointed out this is the type of things you have built up your savings for. DB has assets he can tap for this. It would seem a good investment if it leads to treatment that allows him to stay in early stages longer.

The way I perceive this the medication is most promising if started early. My hope is the PET scan can confirm this is still relatively early in the progress of the disease. Catching it early was also emphasized by the friend I spoke to.

Phoenix1966

From reading various sources, it appears that Lequimbi is the most beneficial for Caucasian males, who are younger/in early stages. For women and people of color, there is no noticeable improvement. And it appears that this treatment currently buys you about 6 months of no further decline.

Iris L.

CS, I had an Amyvid PET scan done that confirmed that I did not have excess amyloid in my brain and thus did not have Alzheimer's Disease. (What the neurologist said is that I don't have Alzheimer's at this time, but that I might still develop Alzheimer's Disease in the future.) My test was paid for by my participation in a clinical trial. Otherwise the cost would have been about $6,000. I would have paid it because I wanted to know!

Iris

Victoriaredux

The field is very fluid & complicated , suggest you talk to a Disability lawyer. Well worth the consult fee , or even to do the filing for your brother - they know how to file, how to word things .

You know the end goal ,the way there is a real life maze and you don't want to waste time or benefits getting stuck in a cul de sac with no re-do.

https://www.medicalnewstoday.com/articles/medicare-waiting-period-waived#summary

https://www.medicare.gov/basics/get-started-with-medicare/before-65

concerned_sister

https://alzconnected.org/discussion/comment/217088#Comment_217088

Thanks for posting that. I remember reading posts here about the groups not benefiting, Our heritage (I'm the DNA nerd in the family) is mostly European UK countries. This does put DB in the cohort showing most promise. I was reading an article from Yale Medicine (though I didn't save the link) that didn't quote that 6 month upper limit. I'll have to do more reading on that point.

concerned_sister

Thanks, Iris. I need to have the cost discussion with DB and his wife. I have the appointment scheduled. They suggested I call back within a week of the appointment for a more accurate estimate. They also agreed I could likely call the insurance company myself to get a more accurate number. I appreciate your input, that you thought it's worth it to gain the knowledge.

concerned_sister

Victoria,

Thanks for your input and those links. I'll come back this afternoon and read through the information. I'll have to check the names we were given to see if a free or low cost consult is available. I agree with your points that with the various dependencies we don't want to have any avoidable hiccups in the timeline.

concerned_sister

https://alzconnected.org/discussion/comment/217148#Comment_217148

I'm able to sit down and read this now. First, thank you for such current information, I notice it states last updated July 11, 2024 re "When is the Medicare waiting period waived?". I did not see any lesser period for Alz. I know I had asked about that, because I was telling the CELA the 24 months would be moot, as he would turn 65 before then.

After reading through and doing some more searches I decided to dial up my friend. I am extremely thankful she's in my circle of friends and is very knowledgeable on this. She mentioned it was important that DB met the criteria for the doctor to order the infusions. I spoke to her last on the day before we got the wrong PET scan results. I mentioned we've scheduled the correct one ordered by the doc, and he'd already done the ordered blood test and determined he's not APOE4/APOE4 per DNA results.

We discussed how the results (of the infusion) are most promising when administered early; our thinking had to go on to plan B as we wouldn't want to wait for medicare elgibility if he met the other criteria for the infusion. She asked about his current insurance carrier (Anthem). He voice brightened quite a bit. She said she works with them all the time, and that they cover the infusion. She of course reminded me of policy deductibles, and out of pocket maximums. She said the doctor she works with had prepared matierials for patients stating that the cost (prior to insurance) was about $26,500 annually. This is inline with what DB's neurologist said, and what the Yale Med article I had seen said. My friend mentioned that if the doctor assures that he meets the criteria, the infusion center will process the insurance approvals and can better tell us what costs to expect. She noted that there will likely be a reset for a new deductible etc. when we go in to 2025.

Phoenix1966

“In a trial that involved 1,795 participants with early-stage, symptomatic Alzheimer’s, lecanemab slowed clinical decline by 27% after 18 months of treatment compared with those who received a placebo.”

-Source (https://www.yalemedicine.org/news/lecanemab-leqembi-new-alzheimers-drug#:~:text=How%20effective%20is%20lecanemab%20for,those%20who%20received%20a%20placebo)

concerned_sister

Again, thank you to all who provided input. I spent about 3 hours on the phone yesterday morning (well, a portion of that was online chat), trying to figure out is the provider in Network. Is there any caps for this specific procedure (PER, Amyloid Scan), based on the approximate cost of the procedure, what is our likely out of pocket.

The provider had a name change sometime in the recent past. I was able to synch up the address on phone number for the provider with the list of in-netwwork providers. I called and had it confirmed this provider is in network.

The person assisting me had difficulty looking up this specific scan, and erroneously quoting me maximums they would pay for a PET Scan. I was able to talk to the provider and get the exact "CPT" codes for the insurance company to look up. With that all synched up we agreed that DB only has about $150 left to meet his deductible, after meeting the deductible, the copay is 40% it all netted out to an expected out of pocket a little north of $2000.

When talking with DB I boiled it down to the essentials. He had pre-authorized me to commit him to up to $500 for the test. I got approval to keep the appointment despite it being more $ than he had hoped for. I spoke with younger brother later, who works with DB and heard the conversation on speaker phone. I got compliments with how I eased him through it. But I also realize that I need to be transitioning to SIL for these things. The nature of her job won't allow mid-day phone calls, so I'll miss that convinience.

Victoriaredux

Yes, this would probably be a good point to evaluate going forward just what SIL can handle by herself with him needing more care in the future -can they handle the billing burden trying the new med presents.

Insurance coding research is about as productive as having a convo with a drunk chatgpt bot. Every answer is "it varies."

Even if the insurance is set up for that year things can change midyear - if $26,500 annually out of pocket, worst case is an issue - best they decide up front if that adds a burden and stressor .

Part D coverages are expected to vary a lot next year with the new OutOfPocket cap— the insurance companies can be expected to adjust their formularies to protect their profits. No free lunch.

There is a lot to weigh- the drug isn't a cure , and comes with a potentially hefty tab plus the treatments.

Being completely on the outside , I'd probably consider using the funds to get a disability lawyer on board so that they can enjoy every second of each "today" moment with a maximum income .

concerned_sister

Thank you for showing me another perspective. It isn't just a question of "can you come up with it" (funds for treatment), but also "should you come up with it" (is the money better spent otherwise).

When the subject first came up SIL was all for spending the money on treatment. DB was less inclined out of fear of side affects. The approach that was chosen then was to have the various tests run to see if the treatment was ruled out, and then face that decision if the option was still on the table.

My understanding is that it is custom for disability lawyers not to expect payment up front, but to take a percentage of the income if the disability filing is successful. This is something I (we) need to investigate.

I spent part of my career in computer programming. I was thinking I need to draw a flowchart with all the if this/then that decision points. Just letting my head spin some of this out, it seems if getting the treatment, and the treatment is successful and it delays the need to hire in home healthcare or to enroll in an adult daycare option, should the degree to which these offset each other be considered?

If you were to try to present the pros and cons and financial implications to SIL what points would you cover?

concerned_sister

I've done a little research on hiring a disability lawyer here in California. From what I've read, the fee is capped at $7,200 or 25% of recovery of back pay, which ever is less.

I'm a planner. So I'm looking in to the what if's of pursuing disability. In my latest conversation with YB, who works with DB, there is no pressure to push DB out. Though he isn't performing at full capacity, he's still contributing. So we may not need to jump on this right away.

For anyone who has California experience, in the event that his performance deteriorates, do you know whether there is any value in applying for California SDI as a stepping stone to federal SDI, or just going to the Federal program is wiser? (When the time comes we'll ask a lawyer, but thought I'd see if anyone in this group already knew.)

Iris L.

How old is he?

What do you mean by CA SDI?

Inquire about Compassionate Allowance. This will fast-track SSDI application once you have the necessary medical documentation. Keep in mind that if he is gainfully employed, even though he is doing limited work in his family business, he would probably not be considered to be disabled.

Iris

Victoriaredux

People don't respond the same but at some point he , if he follows most PWDs, will just resist most everything & react emotionally and SIL may just get so over whelmed since she'll be on the front of his not being able to understand/take direction she goes into survival mode and doesn't want to learn about the niceties of finance & insurance.

So while they are both still "on board" I, again repeating, suggest you get them in with a lawyer to get a disability game plan set up.

At some point he may have to be immediately terminated - if the corp insurance won't cover his errors, he costs money or loses an account, says something to an employee who takes offense, a client is harmed etc.

It is a fatal progressive disease , planning while you have options & cooperation is worth the lawyer's hourly .

concerned_sister

https://alzconnected.org/discussion/comment/218044#Comment_218044

Iris,

As always thanks for your input.

CA SDI, is California State Disability Income. Employees in California pay a small percentage in to this fund on each paycheck similar to paying in to FICA (Social Security) each paycheck. An example of a use for SDI (at least many years ago when I used it) was it provides funding to those out on maternity leave. Though SSDI (federal program) is designed for long term disability, the CA SDI is designed for limited duration with maximum of 12 months. It seems I've read of folks in our state using CA SDI while on leave in pursuit of a diagnosis. Early on in this journey, we considered it may have been neccessary for DB, but he seems to have stabilized (perhaps traceable to donezipil), and the employer has been very flexible for all the appointments and tests.

Age, he turns 64 at the end of this month.

concerned_sister

Victoria,

Thanks for your insights. We did see the CELA, got names of disability lawyers, and he has an estate plan. I shirked a little bit when the plan was presented by the CELA in that I did not read the section on future plans. (My signficant other has his own health crisis, and I was more tuned in to that at the time.) I plan to go through and read it (documentation from the CELA) more thoroughly this week. It seems to me obvious that we'll need to engage a disability lawyer, but we have a little breathing room on that task. But I hear your caution not to delay this. I'm think weeks not months as far as getting emersed in this.

Victoria, your empolyment cautions are all good advice for anyone reading along. For example if this were me or older brother in his working days that would come with many exclamation points. But DB's employment is a very unique situation.

I wholeheartedly agree with the need to plan ahead.

-

This is sort of a side note but not really. Often in this forum the advice is offered to measure your LO (re stages) in terms of their worst day not their best day. Last Oct. DB just could not communicate in email. This was evidenced by incomplete thoughts, repeating himself, and incorrect word choices. In my face to face experience with him this had gotten much better with Donezipil. He gets a well done in my book for the following. Last night he took photos and texted me all his rx bottles. He then typed up each one with name of RX dosing amount, and dosing instructions. He followed up with a phone call to me to highlight the above had been sent, and to make clear there is 14 days left on the one in lowest supply.

I handled the phone call to request the refills. (He still gets tongue tied at moments, but these come less often.) Anyways, the planning ahead and completing a multistep task, I took as good signs of his current abilities.

-

I had mentioned this in a posting elsewhere on site. Oldest brother called Friday to let me know he scored a 25 on a MoCA test. He has a follow-up blood test scheduled for later this month.

As a precaution, I had an MMSE done last week at a doctor's appointment. I passed. I wanted to make sure if there was any urgency for a back up to me. As always this is a necessity, but there is no fire burning.

YB has asked that I start sending updates on the tasks I'm performing and the references I'm finding. He says I've kind of become the reference library in the family, and he wants to make sure he and OB have access to the information in the event I'm unavailable.

Iris L.

CS, I am also in CA and I was not familiar with the term CA SDI. I don't think I applied for it. Perhaps this is what I call short term leave of absence, or sick leave? I had several weeks of sick leave accrued when I had to stop working abruptly years ago. I applied for my company-provided long term disability benefits, which mandated applying for SSDI. I was in my 40's.

I got the impression that your DB is in a family business, and that is why he is stil on the payroll. Perhaps that is not the case.

Since he is somewhat close to retirement age, you may want to determine the difference in benefits in applying for SSDI versus his going on early retirement. For example, what would be his monthly benefit, and when would Medicare commence?

I usually recommend going out on sick leave pending completion of the medical and neurological evaluations. This is because the evaluations take time and require much documentation in order to apply for long term benefits. On the other hand, sick leave or short term leave of absence usually requires only a doctor's note.

Iris

concerned_sister

Iris,

In the work enviroment I was in sick pay was provided by the employer. CA SDI was something I applied for, it was a state program. Though funding differs for unemployment, perhaps we can think of the process of applying for this benefit through the state in the same way. (On a W-2, to my memory, it was always the box on the far right bottom line for a state level tax.) AS I UNDERSTAND IT, THERE IS A QUALIFYING PERIOD, benefits don't kick in day 1. For me, it seems natural to want to collect from this benfit you've been paying into all those years. But I'm under the impression this may not pan out logically to file for this during the waiting period for SSDI to kick in after leaving employment. It's starting to look like we'll have the documentation we'll need for SSDI and won't need a buffer period while getting the documentation together. But this is something I need to look at to really understand the pros and cons.

As far as the employment situation, a family business is a pretty close description. Because the situation is unique I avoid being too specific in a public forum. DB's early decline seemed pretty steep and earlier YB questioned how much longer he'd be contributing. Things have stabalized, and from a communication stand point they have improved since donezipil. YB is comfortable with wait and see. YB is the onsite link to the owner. The business offers nothing in the way of retirement benefits under ordinary circumstances. DB has been wise and invested so there are assets there.

Personal side note, my company had a profit sharing plan with an option of rolling part of it out each year that could be invested in an IRA without any tax consequences. DB had pointed out that for a few years in row my plan had underperformed the market. He was instrumental in getting me to roll out the money, and teaching me how to invest in mutual funds. That was key to me coming up with a down payment on my home and eventually paying off the mortgage early in my retirement. My line of work took big hits during the push to out source and send jobs overseas in the early 2000's (I had about 28 years with the company at that time). Long story short, he coached me in to taking out a line of credit that got me though a period of unemployment and allowed me the room to wait for a postion with the company that had outsourced me. I got back in with that employer and was grandfathered back into their retirement program. About 7 years later I was able to retire young at age 56.

Anyways we can look at me helping him now as karma. He's often expressed his thanks, but I've told him he's been pre-paying me for decades.

Re your medicare question, he has about a year before he is medicare qualified. As I understand it, SSDI would pay what you would get as Soc Sec at full retirement age. By my math, he'd be down about 300 a month vs his current monthly income.

Iris L.

Is CA SDI new? I wonder why I never heard of it or was not told about it by my disability attorney?

Iris

concerned_sister

Iris, I'm sorry it took me so long to respond. I had something in draft, but I guess I got interrupted. I was paying CA SDI on my paychecks starting in the late 70's. I think it was my HR department that pointed out how to file for it when I went out on maternity leave.

concerned_sister

Earlier this week we had the appointment with the neurologist to discuss the results of the Amyvid PET Scan. He was "diffusely positive" for the amyloid plaque. I'm grateful to all those on site who've shared information on the lecanemab infusions. I felt we were well prepared to talk to the doctor about this. This is still his recommendation, though he did warn about the costs and the potential downside. DB is the first of his patients who are pre-medicare that he has recommended this treatment. He was having representatives of DB's {insurance company - correction - pharma company} meet with him the next day to discuss coverage.

DB still has the VA neurologist appointment the first week of October. DB wants to keep with his strategy to get that second opinion before pursuing this treatment.

concerned_sister

What a day. Earlier I was called by the Neurologist office to come in and sign paperwork supplied by the company that make Leqembi, for the purpose of determining what exactly his share of the cost would be based on his insurance copays, out of pocket max etc. I discussed I was willing to come in and sign on DB's behalf, but he wouldn't want to begin infusions until he got the 2nd opinion from the VA. She asked if the VA was going to pay. When this came up before, my first reaction had been that if the wouldn't run the PET Scan necessary to pursue this course of treatment, it was unlikely they'd cover it - but I hadn't checked it out. I did some googling and found some news articles in the last year or two indicating the VA had approved use of Lequembi for the VA patients. I called the social worker at the local VA office to ask how I'd pursue this. He confirmed we hadn't had our first VA neurologist appointment. He wanted me to obtain notes from the private neurologist on DB's current status, the pharma company paperwork, and copy of the recent report from the PET scan. I did all that and dropped it off. My understanding is that it will be reviewed by his PCP in the local office, and then faxed to the neurologist at the Long Beach, VA. There's hope it will be covered.

harshedbuzz

@concerned_sister fingers crossed for you this get approved quickly.

concerned_sister

Thanks. I'm still afraid the hiccup will be VA won't consider him 100 pct disabled and pick up full costs while still employed. He was willing to "retire" if that got him to Medicare early. We may need to revisit that conversation if it affects VA disability rating.

eaglemom

I was just checking to see what, if any news you'd found out.