The 2019 Trip – Part One


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It was a dark and stormy cruise …

Let me just preface this post with a note that things do, eventually get better. They just didn’t start out that way.

We had the trip planned for the better part of a year. Starting with a Saturday night in New York, then catching a transatlantic cruise on the Norwegian Pearl from New York to Amsterdam — a 14-day journey with stops in Cork (Cobh) and Dublin (Dun Laoghaire), Ireland; Paris (Le Havre), France; London (Tilbury), England; and Bruges/Brussels (Zeebrugge), Belgium, before alighting in Amsterdam where we would spend another five days.

Either from life experience or perhaps the streak of superstition I have, I’ve developed a belief in omens. I have found that things that start off track (projects, relationships, jobs, etc.) usually have trouble ever meeting their potential. So the screaming toddler that sat behind us on the NYC flight who yelled at the top of her lungs and kicked our seats for 3.5 hours should have given me a hint how much of the trip was going to work out.

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Can you help this student with a research project

I wanted to pass along the following information from a fellow RA patient who happens to be working on a research project for graduate school. If you’d be willing to participate, please contact her directly:

I am currently working on a capstone project for graduate school on inflammatory and degenerative forms of arthritis. I am looking for candidates to interview for a research project and would be so grateful if you were willing to participate. It would consist of one main interview and follow up questions as I dig further into the project.

My target audience is anyone 18 to 40 years old with an inflammatory or degenerative type of arthritis and take a prescribed medication to help with their treatment plan. If you are interested or know anyone that would be interested to help or are simply curious as to what I’m working on please let me know. The best way to contact me is at this e-mail address:

Thanks for any help you can give her and thanks for checking in.

You haven’t heard from me in a while because …



Okay. I’m guilty of neglecting my blog and, by extension, you. But the fact is, I’m doing well so I’ve been busy off doing other things. Sorry. (No, not really.)

I recently spent nearly a week in London with some other amazing advocates from the US, UK, and Europe at a patient advisory panel and I’m going to have the opportunity to provide the patient’s voice to a much, much wider audience in the near future.

I’ve been working part-time and am about to take on a second client. It’s not a lot, but it’s enough to keep my brain working and I get to interact with some amazingly bright, talented people. Plus it brings in a few bucks to supplement the bit of fixed income I get every month.

And in a month or so, hubby and I are going transatlantic on a cruise for 15 days winding up in Amsterdam where we’ll spend another few days before coming home.

Will spend my birthday in Amsterdam which is quickly becoming one of my favorite cities.

On the RA front, I’m doing pretty well. I’ve been on my current treatment for more than two years (I think that’s a record). I went off methotrexate last July and I’ve happily stayed off of it since then. I think I would actually feel better with the methotrexate and more frequent infusions, but I’m happier with less medication and I’m doing well. Today I walked more than a mile for the first time in ages.

I tell people that I’m doing well, for me, which is true. But with me, there is always something going on. We’re in watch mode for a spot on my mammogram and some marginal labs. But neither are interfering with how I feel and I’m not going to worry about them until I have something to worry about.

So I’m sorry I’ve neglected you but glad that there are good reasons. I hope you have good reasons to think about things other than RA as well. Thanks for checking in.

Transcelerate Clinical Trial Access & Information Exchange

I am happy to share the following information concerning the TransCelerate Clinical Trial Access and Information Exchange survey. It’s my understanding they would like input from patients as well as caregivers.

The TransCelerate Clinical Trial Access and Information Exchange workstream has created this survey to help improve the quality of information featured by clinical trial registry websites so that they are patient-friendly, informative & easy-to-use.

The Transcelerate team would like as many patients or caregivers to share their thoughts with them here:

Thanks for taking time to provide feedback!

How do you prefer to get information?


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A friend and fellow advocate wants to partner with me and an organization we both support to do a Twitter Chat. This would be specifically targeted toward the older spectrum of people with chronic illnesses. We both hold the contention that this group has different needs than people who are younger.

I’ve demurred up to this point because I also hold the opinion that (having been in communications for most of my career) that older people (like me) don’t necessarily turn to things like Twitter Chats and podcasts for information — especially important information like healthcare. (See my post here: Are RA Patients Getting the Message?)

So I thought I’d ask. What sources do you/would you use for information? (This is the first time I’ve inserted a poll into my blog, so please forgive any minor glitches …) Please check all the answers that apply — including the over/under 50 years old one.

I vote that 2019 is a wonderful, healthy year for us all. Thanks for checking in and thanks for your input!.


Money and Medicine: Is Transparency the Answer (Redux)


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Now, more than ever before, cost is becoming a determining factor in making healthcare decisions. I therefore applaud Johnson & Johnson’s recent decision to put the cost of their medications and ‘anticipated patient copay amounts’ in their advertisements. They’re starting with an aFib drug, Xarelto, and will phase in others in the future. (See news story here:

One of the reasons I write this blog is that I truly believe that knowledge is power. The more we know about something, the better decisions we can make. This is especially critical when you’re dealing with a chronic disease. Another critical area is managing your money.

The actual cost of the drug is but one component that affects what patients actually pay. And while knowing how much something costs might help us make better decisions, does this transparency help us control the rising cost of drugs?

I discussed this question in more depth in a previous post which I’ve included below. Two disclosures. The first is that J&J manufactures the medication in my current treatment for RA, but I have received no consideration for this post nor have they had any part in review or commenting on it. The second is that the following post is long and complex, but hopefully rewarding to read.

Money and Medicine: Is Transparency the Answer?

One of the greatest shocks that a patient has after being diagnosed with RA (which is the first shock) is how expensive treatment is. Besides doctors’ visits and labs and physical therapy and tests like X-rays, there is the cost of medication. Many patients are started on methotrexate and perhaps another DMARD which can be inexpensive to moderately priced. However at the point that the patient “graduates” to biologic medications, and many of us do, the costs really escalate. A recent study I read reported that approximately 87% of all patients were switched to a biologic as the next treatment step after oral methotrexate (as opposed to injected methotrexate or other DMARDs).

There are two ways of looking at prescription sales. The first is the physical number of prescriptions that are filled. Depending on the list you find, generic Lipitor (a cholesterol drug) is at or near the top. Interestingly in this day of opioid crisis, the hydrocodone/acetaminophen pain killer also makes the top 10 list. There are no RA-related drugs on the list. The closest I’ve found is prednisone, which is used for all kinds of things, not just RA. It comes in at number 19.

The second way to look at prescription sales is by the dollar amount. That is, even though the actual number of prescriptions is not as great as the first list, the cost of the drug propels it on to this list. Again, it depends on the list and when it was produced, but you’ll likely find not one, but four, biologics used for treating RA: Humira, Enbrel, Remicade and Rituxan. That’s 40% of the top-10 drugs by sales.

It’s hard to miss headlines that raise concerns about price-gouging by pharmaceutical companies. Turing Pharmaceuticals CEO who raised an HIV/AIDs drug from $13.50 to $750 overnight and the increase of Epipen prices to $500 are two that come immediately to mind.

But why is that? I’ve been around a lot of different industries and I’m here to testify that inflated pricing occurs all over the place. We don’t see headlines or Congressional investigations when fancy new smart phones or even basics like housing are overpriced.

It’s because, right or wrong, we hold pharmaceutical companies to a higher standard. We tend to think that it’s wrong to make a profit from people who are ill.

I agree completely that any product that affects people’s health or safety should be held to a higher standard than those that don’t. That’s why we have agencies like the FDA – to help ensure that medications do what they are intended to do and do so at minimal risk to the patient.

But should pharmaceutical companies be held to a different standard than any other company that produces commercial products? Like other companies, pharmaceutical companies have a wide range of stakeholders. Many are public companies and therefore have shareholders that have a right to expect a return on their investment. They need financial resources to attract scientific talent. They must fund new drug development. The last figure I saw, which is a few years old now, estimated that it takes $5 billion (with a “b”) to bring a new drug to market. And the drugs that do pass all the reviews and regulatory hurdles must bear the burden of paying for the research and development of drugs that didn’t make it.

So why do we think it’s such a bad idea to let pharmaceutical companies – who hold the keys to our future health – make a profit? I personally feel that all companies (not products) should be treated under the same standards. In case you missed it, the point is any company that engages in unethical behavior should face sanctions regardless of what kind of company they are. But I also believe that all companies must make a reasonable profit to thrive.

I would have loved to have been at the American Medical Association’s National Advocacy Conference this week. There was a debate about prescription drug costs between Kirsten Axelsen, VP of Global Policy for Pfizer, Inc. and Aaron Kesselheim, MD, JD, MPH who is an associate professor of medicine at Harvard Medical School and a noted policy scholar. I won’t recount the debate here, but there were some incredibly interesting and introspective points made on both sides of the argument. A report of the debate by MedPage Today can be accessed here and is well worth exploring:

The other interesting thing that happened along these lines this week was that Janssen released its U.S. Transparency Report. (The website, the full report, and an executive summary can be accessed here:  Janssen’s parent company is Johnson & Johnson and I’ve been a fan ever since the 1982 Tylenol recall which still stands as the gold standard of public concern, crisis management, and transparency. For those of you are unfamiliar with this event, before tamper-resistant packaging, a few bottles of Tylenol were poisoned. Even though it appeared to be an isolated incident in Chicago, J&J recalled all the Tylenol capsules across the US and took steps to ensure a safe supply of the drug. It cost them millions.

Janssen’s is actually the first such transparency report I’ve seen. (That doesn’t mean that there aren’t any – just that I haven’t seen them.) Public pharmaceutical companies already face a huge amount of disclosure requirements from the Securities and Exchange Commission (SEC) and other regulatory agencies. This additional transparency reporting adds yet another layer of information to what is already available. While the full report should (IMHO) be packaged and sold as a cure for insomnia, the website as well as the executive summary is actually pretty approachable by most humans, and I applaud Janssen for that.

But is more transparency the answer?

I have done a lot of work with public companies over the course of my career. These companies (as noted above) must file all kinds of disclosure documents with the SEC to help ensure transparency for the investing public. In 2000, the SEC implemented the Regulation Fair Disclosure (Reg FD) and in 2002 Congress passed the Sarbanes-Oxley Act (SOX).  The amount of effort and associated cost for companies to comply with these regulations was enormous.

What was the effect? While it’s definitely a mixed bag of results, on the downside, it definitely dampened the market. The burden of complying with RegFD and SOX caused some companies to stop being a publicly traded company while other companies cancelled their public offerings. While the regulations were put in place, in part, to help the individual investor, they probably helped them the least. I heard one securities lawyer quip that the RegFD and SOX filings were the only documents that got read more often before they were published than after. What he meant was that they were read more by the lawyers and accountants who were paid to produce them than read by the investors they were intended to help.

I think Pfizer’s Kirsten Axelsen makes this point very well in the debate stating that additional pharmaceutical company transparency laws, like the one recently passed by New Hampshire, won’t lower medical costs. Based on previous experience with similar SEC regulations, I would suggest that it would, in fact raise those prices. Sure you want transparency, but do you want enough to pay another $5 or $50 or $500 per prescription?

As a patient, even a nerd who actually reads the full version of transparency reports, I don’t necessarily care about more transparency. What I care about is affordable medication for those people who need it. And yes, I also want pharmaceutical companies to make a reasonable profit so they can continue to hire smart people and make new drugs.

Unfortunately, there is more to the patient’s cost of medication than just drug pricing. There are a lot of factors involved, but let’s be honest that much of a patient’s actual cost is determined by insurance coverage. I take a biologic that has a list price of more than $15,000 per infusion. Right now, because I have good insurance, I pay a $50 copay. If I hit my deductible and out-of-pocket limits, it won’t cost me anything. There are many, many people in this country that are not as fortunate as I am. They cannot afford their medications. They cannot afford to treat the diseases that may be killing them.

I’m not going to debate the Affordable Care Act (also known as Obama Care). It will no doubt be repealed in the near future anyway. The bad news is that no one seems to know what will replace it, so no one really knows whether they will be able to afford medical care (including medications) going forward. This type of uncertainty is far more damaging for patients than any lack of transparency.

A patient’s cost of care is many things. But as I heard from a friend just today, “… it’s policy, not politics.” It’s not in adding transparency requirements, it’s not in throttling the marketplace, it’s not  applying a separate set of ethical standards to one type of company and not others. It’s making responsible policy decisions that create the environment in which all of us have access to reasonably priced health care.



… Then God Laughs

There is an old saying that goes something like, “Man plans, then God Laughs.” I must tell you that s/he must be ROTFL (rolling on the floor laughing) at the moment. It’s not even the things I planned, it’s all the unplanned surprises that have overtaken my best intentions to be more diligent about my blog. (I apologize upfront if this is TMI … and I apologize even more for whining.)

  • We left the Saturday before Christmas for our annual holiday  trip. That day, while out of town, I not only lost a crown on a molar, I bit it as it came out, completely obliterating it. It was almost a week before I could get back to Dallas and my dentist. And because of the New Year’s holiday, the new crown (read $$$) is delayed coming in. I finally am having it fixed this week (hopefully).
  • The day after Christmas I had my annual gastroenterology checkup. There’s enough going on that I had to go in for an upper endoscopy last Monday. Things aren’t too bad, but my esophageal stricture had reformed and my doctor had to stretch things out again.
  • My new right shoulder (reverse shoulder surgery last February) has been amazing. Even the doctor has been impressed at how well things have gone. But I rather suddenly experienced debilitating pain when I moved my arm. I was good as long as I kept my elbow close to my waist but anything else was painful. I saw my surgeon last week and the replacement itself looks great. However, it’s apparent that I have a muscle tear. Rather than face yet another surgery in that shoulder that’s already had four (two rotator cuff repairs, a biceps tendon relocation and a total reverse replacement), we’re going a more conservative route and let it try to heal on its own. But that means I have to keep my dominant right arm in a sling for several weeks.
  • On top of the health issues we’ve had a rash of household/auto issues. The kitchen sink clogged and needed a plumber (over the holidays), our ancient garage door opener finally broke beyond repair and had to be replaced, and there is a car issue that is going to take some serious $$$ to fix.

All this in the last three weeks. Sigh.

The good news is that RA, at least, is still at bay. After being on more than 10 different treatment plans over the years, I’ve been on the same biologic now for more than two years and am doing well, even after abandoning methotrexate last July and stretching out my infusion schedule. Because of that, I took on some part-time work starting December. (Of course, all these health issues and especially being in a sling has impacted my ability to work.)

In other good news, on New Years Eve, my husband and I celebrated the 25th anniversary of our first date. We had oysters and beer at a little seafood dive and have gone back every year since to mark the occasion.

I am hopeful that the rocky start to the year is not a sign of how the rest of 2019 is going to progress. My fingers are crossed that I’m getting all the bad stuff out of the way during the first of the year and that the rest of 2019 will not only be amazing for me but for all of us.

Happy new year and thanks for checking in.

Would you rather …?

“Would you rather?” is a popular game where an individual is asked to choose between two options and often asked to explain the reason behind their answer. For example, “Would you rather win an Olympic gold medal or an Academy Award?” It’s a great icebreaker and conversation starter. The questions can be almost anything from serious to naughty and can be played in a wide variety of circumstances.

I recently played a real-life “Would you rather?” with my RA. I tell the full story in my post at here:

It’s Now November

My list of things to write about keeps growing. I have all sorts of topics on my list — each of which I’m passionate about: personal experiences, news from the ACR meeting, updates on healthcare reform, health and the absurdities of life in general. But as anyone who writes will tell you, sometimes the writing muse just goes missing.

I’m doing really well. I’m still off MTX since the end of July. I’ve also extended the time between biologic infusions. I was on a six week infusion schedule. I stretched it last time to seven weeks, and have my next infusion scheduled for the standard eight weeks. While I’ve been a bit more achy and have a bit more morning stiffness, I actually feel great. My last labs were the best they’ve been in years, including my liver tests which are now normal after I’ve abandoned methotrexate.

I am having conversations with a former client about a longer-term, part-time working relationship. This will allow me to work with some great, smart people; be productive and put some extra $$ in the bank. At this point, it will no doubt be after Thanksgiving before that launches, but I’m looking forward to being professionally engaged again.

There is one fly in the ointment. Just in time for the holidays, I seem to have developed a tree-nut allergy. Fall in Texas means pecans: roasted salted pecans for munching, pecan pie, pecan waffles and muffins, pecan pralines, pecans and chorizo in the turkey stuffing, etc. etc. I had a pretty severe reaction the other morning when I had a small amount of granola and fresh raspberries with cashew milk for breakfast. I’ve occasionally had itchy skin/hives when I’ve overdone snacking on mixed nuts, but this time my mouth and throat were involved and the skin reaction was both immediate and significant. I don’t know if it’s because I’ve backed off the immunosuppressive medications or whether I’ve just naturally developed the allergy. I don’t think there’s anything to be done except avoid nuts but I have an appointment with an allergist in a few weeks to have the conversation. The good news is that peanuts are legumes, not tree nuts so I can still eat granola bars with peanuts and have peanut butter toast for breakfast. (Yes, I know that there is a chance for cross contamination because peanuts are generally processed in facilities that also process other nuts. Right now, I’m willing to take that chance.)

So I’m here. I’m doing well. I’m stalking all of you through your own blogs and social media posts and I promise that I will starting writing again.

Hugs to all. Thanks for checking in.