Why Some Patients Say Yes
July 7, 2021 — Rolfe Johnson is a glass-half-full kind of guy, but also a realist. As a longtime attorney in Houston, only recently retired, he specialized in taking companies public, so he is also a man who knows how to do his homework.
Johnson also has Alzheimer’s disease. So, when his neurologist called to tell Rolfe and Carol, his wife of 60 years, that he would like to prescribe aducanumab (Aduhelm), the controversial new Alzheimer’s drug just approved by the FDA on June 7, he didn’t hesitate. “I agreed to it right away,” he says.
But in true lawyer fashion, he also had a laundry list of questions.
“I certainly wanted to know what he knew about the company, the maker, what their history was,” says Rolfe, 82. Assured that the company, Biogen, was solid, he asked other questions about what he could expect from the drug. The couple both expressed concern about the cost — a staggering $56,000 a year list price — and were assured that an arrangement was being worked on.
Rolfe had his first monthly infusion June 30.
“There are a number of side effects they warn about, and so far, I haven’t had any of those,” he says.
He’s keeping his expectations in check. He knows it won’t reverse the damage already done since his diagnosis 5 years ago. “If it works well, it prevents the propagation of Alzheimer’s,” he says, beginning “from when you start taking it.”
His wife, 81 and a psychotherapist, chimes in: “That’s as good as a cure for us.”
As advocates and critics debate the FDA’s approval of the new drug, and a chorus of experts and patient advocates protest the price, many patients and their families are excited about it, hopeful that it will stop the debilitating disease from getting worse and help them function and enjoy time with family and friends.
Aduhelm: Sticking Points
The price of the drug isn’t the only point of debate. So is the FDA’s accelerated approval, which was based on clinical trial data that found a reduction in amyloid plaques in those given the drug, compared to those in the placebo group. The plaques build up in the brain and are thought to lead to the memory loss and eventually the inability to do the tasks of daily living. But reduction of the plaque, critics say, doesn’t prove there is a clinical benefit, such as remembering a grocery list or the route home.
The FDA also approved it broadly for use in Alzheimer’s patients, although some experts say it works best in early stages and should be preserved for those patients.
Patient Interest is High
Despite the debate and the unknowns, Rolfe’s neurologist, Paul Schulz, MD, a professor of neurology at McGovern Medical School at the University of Texas Health Science Center in Houston, says he’s been inundated with emails and calls from patients and families, asking about the new option.
Ever since the approval, he says, he’s gotten numerous emails and phone calls, some from patients he hasn’t seen in 3 years. “We get a lot of them every day,” says Schulz, who also directs the UT Health Neurocognitive Disorders Center and is an adviser for Biogen.
According to Biogen, more than 900 sites across the country are ready and prepared to give the monthly infusions.
Addressing the Cost Barrier
For the Johnsons, one of the controversial points — price — was solved. Officials at Memorial Hermann Hospital, UT Health’s teaching hospital, agreed to donate the money to Schulz’s dementia program so that Johnson can get 6 months of infusions without cost to him. “The hospital is very supportive,” Schulz says.
By the end of that period, Medicare may make a decision on coverage, experts say. Once Medicare decides, other insurance plans typically follow its lead.
Schulz has found another avenue to solving the prohibitive cost issue. Several large pharmacies in his area have agreed to infuse patients now and bill Medicare “if and when they approve it.”
While smaller pharmacies can’t take that potential financial hit, some of the larger ones are able to, he says.
Treat Now, Pay Later?
Marc Archambault, 70, of South Kingstown, RI, was the first person in the world to receive the drug outside of clinical trials. He doesn’t know if he is on the hook for that fee or not. So far, he hasn’t paid anything but says he isn’t sure about how coverage will work out.
That didn’t stop his resolve.
“There was no way I didn’t want to do it,” he says.
He received his first infusion June 16 at Butler Hospital in Providence, RI. And he half-jokes: “I think the first person in the world to get it [after approval] should not have to pay.”
He, too, is a realist about what the drug can and can’t do. “This is a shot for me to stay hopefully as I am now,” he says. “I said yes right away.”
Diagnosed in 2014, Archambault is a longtime real estate agent in South Kingstown, a town of about 30,000, some 30 miles from Providence. He is still active, but he gave up managing the office in 2017 and asks for help when he needs it. “I started to have trouble with words pretty early,” he says. “All of a sudden, I can’t get the word out.”
He’s open about his diagnosis and asks for help from those close to him. For instance, if he is trying to talk about a car but can’t get the words out, he’ll tell his daughter or a colleague to tell him the word for “the thing you sit in and it gets you around town.”
He’s had no second thoughts about the decision, he says.
“It is my turn to do this,” he says.
He had already been a research participant at the Memory and Aging Program at Butler Hospital. At a news conference on the day of the infusion, Stephen Salloway, MD, director of neurology and the Memory and Aging Program, said that, “Today we open a new era in the treatment of Alzheimer’s,” with a focus on slowing the progression. Salloway was co-chair of the global investigator steering committee for Aduhelm’s phase III studies.
“If this works, I feel like I may not have to go through those last stages when I don’t know anybody,” Archambault says. “It isn’t perfect, but I’m giving it a shot.”
Waiting Out the Reimbursement Issue
Others, like Jay Reinstein, say they will be ready for the treatment once the reimbursement issue is decided. A former assistant city manager in Fayetteville, NC, he was diagnosed in 2018 at age 57 with younger-onset Alzheimer’s disease. Originally planning to work until age 65, he had to retire early.
“My neurologist has said that I would be a good candidate for Aduhelm, and the only delay is waiting on a decision by Medicare to determine the amount they will cover for the infusion.”
The list price, he says, is “more than I can afford at the moment. Once a decision is made, even if it does take months, I plan to move forward with Aduhelm.”
Meanwhile, he says, “I try to focus on things I do well.” He says he is on the Alzheimer’s drugs donepezil (Aricept) and memantine (Namenda), and “I do feel like it’s helping me.”
With the new drug, he says, “I understand there is a potential for swelling of the brain, a potential for bleeding. To me, the benefits outweigh the [potential] side effects.”
He and his wife, Angela, celebrated their 30-year anniversary in May. They have two daughters, a son, and four grandchildren. “I want to be around for my grandkids and kids,” he says.
To cope, he goes to therapy and a support group and remains hopeful that things will work out. “I’m just waiting on the green light. I’m just crossing my fingers.”
Aduhelm as Step One
Patients’ passion and excitement to start the treatment don’t surprise Schulz. The approval of the drug “is giving people a lot of hope,” he says. He agrees the effects are far from perfect and the drug can’t reverse the damage. “With no disrespect meant to Biogen, it’s giving us a 25 to 40% less decline on different parameters [measured]. That’s way better than no effect.”
The approval, he says, “is the first important step of finding things that are effective.” After then-President Richard Nixon declared a war on cancer in 1971, “we started getting medicines that had better effects. I think this is the same way.”
Family, Friends on Board
Support from family and friends seems to convince those who have begun the drug or want to get it that their decision is sound — and to keep their spirits up. “My daughter is excited about it,” Reinstein says, “as my parents are.”
While his wife, Angela, worries more about the potential downsides of the treatment than he does, she is also on board.
None of these patients talk about a “cure,” but more about holding onto what they have. As they cautiously anticipate a future they can function in, they’re also enjoying life in the moment.
Archambault laughs about how popular he’s become since news of his infusion was publicized. “I’ve heard from a ton of old friends.” He’s booked fairly solid for lunch and dinner. “None of my friends said, ‘What are you doing?’ ‘Are you nuts?'”
Rolfe needs to dust off his dancing shoes. The Johnsons, who were high school sweethearts, have three adult children and 11 grandchildren. “Our oldest grandson just got engaged,” says Carol, who says she is hoping for great-grandchildren soon — and isn’t shy about letting family members know that. “There’s a huge family wedding next February.”
Rolfe smiles as he chimes in: “We’re going to dance at that wedding. My high school sweetheart is going with me.”
At this time it seems like WordPress is the best blogging platform out there right now.
(from what I’ve read) Is that what you are using on your blog?
I seriously love your website.. Great colors & theme. Did you build this web site yourself? Please reply back as I’m looking to create my very own website and would like to find out where you got this from or what the theme is called. Many thanks!
Hey there! This post could not be written any better! Reading this post reminds me of my old room
mate! He always kept talking about this. I will forward
this article to him. Pretty sure he will
have a good read. Many thanks for sharing!
This design is spectacular! You most certainly know how
to keep a reader amused. Between your wit and
your videos, I was almost moved to start my own blog (well, almost…HaHa!) Wonderful job.
I really enjoyed what you had to say, and more than that, how you presented it.
Too cool!
Magnum Slot
MAGNUMBET adalah merupakan salah satu situs judi online deposit pulsa terpercaya yang sudah popular dikalangan bettor sebagai agen penyedia layanan permainan dengan menggunakan deposit uang asli. MAGNUMBET sebagai penyedia situs judi deposit pulsa tentunya sudah tidak perlu diragukan lagi. Karena MAGNUMBET bisa dikatakan sebagai salah satu pelopor situs judi online yang menggunakan deposit via pulsa di Indonesia. MAGNUMBET memberikan layanan deposit pulsa via Telkomsel. Bukan hanya deposit via pulsa saja, MAGNUMBET juga menyediakan deposit menggunakan pembayaran dompet digital. Minimal deposit pada situs MAGNUMBET juga amatlah sangat terjangkau, hanya dengan Rp 25.000,-, para bettor sudah bisa merasakan banyak permainan berkelas dengan winrate kemenangan yang tinggi, menjadikan member MAGNUMBET tentunya tidak akan terbebani dengan biaya tinggi untuk menikmati judi online
Hey there! I know this is kind of off topic but I was wondering if
you knew where I could get a captcha plugin for my comment form?
I’m using the same blog platform as yours and I’m having problems finding
one? Thanks a lot!
Workplace
Feeel free to surf to my blog post :: 이지알바
Hyperlink your PENN Play account andd watch your rewards grow as you play!
Also visit my web-site… 우리카지노 추천
According tto this year’s Syria Ecolnomic Monitor report by the Glpbe
Bank, women’s workforce pargicipation doubled from 13% inn
2010 to 26% in 2021.
Here is my web site – ezalba.co.kr
Go to Red Dog’s online Korean Casino Site web-site and coick the “Sign Up” butfon at the best of your screen.
Lover of all things gambling – Sports betting, Casino, Poker and of course, Las Vegas.
My web site 우리카지노
Players can get a 300% Bonus of up to $3000, on each and every of teir 1st three
deposits.
Feel free to surf to my page :: 슬롯사이트 추천
For BLS to say that it was 90% confident in this quantity, the
estimate had to be outside of +/- 268,000.
My web site; ezalba.co.kr
Paragraph writing is also a fun, if you know then you
can write if not it is complex to write.
Wow that was strange. I just wrote an extremely long comment but after I clicked submit my comment didn’t appear.
Grrrr… well I’m not writing all that over again. Anyhow, just wanted to say wonderful blog!
hello there and thank you for your info – I have definitely picked up something new from right here.
I did however expertise some technical points using this website,
as I experienced to reload the web site lots of times previous to I could get it to load properly.
I had been wondering if your web host is OK? Not that I am complaining, but
slow loading instances times will often affect your placement in google and can damage your quality
score if advertising and marketing with Adwords.
Anyway I am adding this RSS to my email and could look
out for a lot more of your respective exciting content.
Make sure you update this again very soon.
But Ms. Blauu warned that it is not possible to separate nature from nurture.
Here is myy homepage :: homepage
Great post.
My partner and I stumbled over here coming from a different web address and thought I should check
things out. I like what I see so i am just following you. Look forward to
looking into your web page repeatedly.
My spouse and I absolutely love your blog and find most of your post’s to be just what I’m
looking for. Do you offer guest writers to write
content available for you? I wouldn’t mind publishing a
post or elaborating on many of the subjects you write regarding here.
Again, awesome blog!
Greetings! Quick question that’s totally off topic.
Do you know how to make your site mobile friendly?
My site looks weird when browsing from my apple iphone.
I’m trying to find a theme or plugin that might be able to
fix this issue. If you have any recommendations, please share.
With thanks!
This article presents clear idea in favor of the new people of blogging, that genuinely how to do
running a blog.
Spot on with this write-up, I actually believe this site needs a great deal more attention. I’ll probably be returning to see
more, thanks for the info!
Hi there, You have done an incredible job. I’ll definitely digg it and personally
suggest to my friends. I am confident they’ll be benefited from this web
site.
Wow, wonderful blog layout! How long have you been blogging for?
you make blogging look easy. The overall look of your site is excellent, as well as the content!
Its like you read my mind! You appear to know so much
about this, like you wrote the book in it or something.
I think that you can do with a few pics to drive
the message home a little bit, but other than that, this is great
blog. A great read. I’ll definitely be back.
Fine way of telling, and good paragraph to get data about my presentation focus, which i am going to present in school.
Its like you read my mind! You appear to grasp a lot approximately this, like you wrote the e book in it or something.
I think that you simply could do with some p.c. to force the message house a bit, however instead of that, that is wonderful blog.
An excellent read. I’ll certainly be back.
I absolutely love your blog.. Great colors & theme.
Did you create this website yourself? Please reply back as
I’m attempting to create my own personal blog and want to learn where you got
this from or exactly what the theme is named. Appreciate it!
Amazing! This blog looks exactly like my old one! It’s on a totally different topic but it has pretty much
the same page layout and design. Great choice of colors!
For latest news you have to pay a visit web and on the web I found
this site as a most excellent website for most recent updates.
Ridiculous quest there. What happened after? Good luck!
You actually make it seem so easy with your presentation but I find this
matter to be actually something that I think I would never understand.
It seems too complicated and extremely broad for me.
I am looking forward for your next post, I’ll try
to get the hang of it!
Howdy! Would you mind if I share your blog with my myspace group?
There’s a lot of people that I think would really appreciate your content.
Please let me know. Cheers
they could rely on their husband’s
Also visit my blog 요정알바
Link exchange is nothing else except it is only placing
the other person’s web site link on your page at appropriate place and
other person will also do same for you.
I think the admin of this web page is actually working hard in favor of
his site, because here every material is quality based stuff.
If you wish for to grow your experience simply keep visiting this website and be updated
with the most up-to-date information posted here.
I am extremely impressed with your writing skills as well
as with the layout on your weblog. Is this a paid theme or did you modify it yourself?
Either way keep up the excellent quality writing, it is rare to see a nice blog like this one
today.
I really like reading through a post that will make people think.
Also, thank you for permitting me to comment!
Its like you read my mind! You appear to
know so much approximately this, like you wrote the e-book in it or something.
I think that you just can do with some p.c. to force the message house a little
bit, but other than that, this is fantastic blog. An excellent read.
I will certainly be back.
It’s great that you are getting ideas from this article as well as from our discussion made here.
Hi to every one, it’s genuinely a fastidious for me to
pay a visit this website, it consists of useful Information.
top online pharmacy india: indian pharmacy online india online pharmacy
Insightful piece
great article
great article
Insightful piece