Dear Barb: Thanks!

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Even though I publish things on the Internet, it’s a bit weird to find out that people actually read them. Whenever I meet someone in person who reads my blog I immediately get self-conscious trying to remember what frustrations I’ve vented and whining I’ve done, suspecting this person probably thinks I’m probably a few sandwiches short of a picnic.

I just came back from an amazing trip where I ran across two people who read my blog. One was in the same meeting I was in and the other, who I will call “Barb”, turns out to be a friend of a friend (sort of).

At several points during the meetings I attended I was reminded of the importance of the RA community. While there is a lot of officially sanctioned/sanitized information about the disease available, community is where we learn about the true patient experience. Community, whether person-to-person or online, is where we connect with one another, get advice, give comfort and share what it’s really like to deal with this disease. Without community, we’re alone. With community, we have an army at our back.

And it’s my readers who continue to encourage and inspire me to keep writing after more than nine years. So to Barb, and the rest of you who have walked my journey with me, thank you.

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The IFAA

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I love it when I find a new, reliable resource in the fight against RA and other inflammatory diseases. I should have already known about the International Foundation for Autoimmune & Autoinflammatory Arthritis (IFAA) because I’ve met some of their members with whom I’ve been quite impressed.

I ran across the IFAA in conjunction with an RA study group which published a couple of items from the IFAA.

Here’s hoping that you have the resources you need in your personal battle against this disease. Thanks for checking in.

And I’m Back …

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As I look back on the years of corporate life and the countless business trips, one of the things I’m thankful for is the cache of airline miles and hotel points I accumulated that let me continue to be able to travel. As you no doubt know from the “reruns” of past blogs, that’s exactly what I’ve been doing the last couple of weeks on an amazing trip that included London followed by a transatlantic cruise. While a bit challenging with RA, the trip was actually pretty well organized with one day of activity in port followed by a day (or two) of rest at sea. But it’s great to be back!

My husband, the brilliant photographer, will have wonderful pictures posted one of these days, but here are a few shots from our ports of call.

I hope that all was well with you while I was gone. Thanks for checking in.

The “Gherkin” in London

Scalloway Castle in the Shetland Islands, Scotland

 

The Sun Voyager in Reykjavik, Iceland

Coming into St. John, Newfoundland, Canada

The harbor in Portland, Maine

The Roadblock in Naming it Rheumatoid Disease

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There seems to be quite a discussion in our community about the misunderstanding that the term rheumatoid “arthritis” causes and a case to be made for calling it “rheumatoid disease.” I don’t necessarily disagree, but I do see some major problems with it. I discuss a major one here: https://rheumatoidarthritis.net/living/the-roadblock-in-naming-it-rheumatoid-disease/

Nothing to fear but fear itself

While I’m offline for a while, thought I’d refresh some of favorite posts. This one is from a few years back, but I believe it’s just as valid today. Hope you enjoy it.

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The Dallas-Fort Worth Metroplex where I live has an intricate system of highways, streets, and side roads that somehow manages to move  millions of us from one place to another. These transportation arteries are connected through an amazing array of engineering marvels constructed of connectors, cloverleafs, and fly overs.

I was recently driving from downtown to my home in North Dallas and needed to take the Dallas North Tollway (DNT). This particular intersection is a single-lane raised ramp that connects one of the main downtown surface streets to the higher level of the DNT. Since it’s a single lane, it is often backed up. It’s also narrow, curved, and rises off the ground about 20 feet. (What’s not to love?)

It seemed particularly backed up on this occasion and I noted that while there were no cars actually on the ramp, there was a single car that was apparently stalled right at the entrance of the ramp. There was no way to get around the car on to the ramp and traffic was quickly backing up.

Sure enough, the emergency flashers came on the car, but it [thankfully] began to ease up the ramp at about 10-15 mph. It came to a complete stop at the crest of the ramp, then continued inching carefully forward.

When we reached the DNT, and were once again on solid ground with four straight lanes of traffic, the flashers went off and the car drove away at highway speed.

It was not a problem with the car, it was a problem with the driver. The driver was apparently terrified of driving on the overpass, and thus slowed down.

The fact of the matter is, you can get anywhere in DFW on side streets, without getting on a highway. It’s not as fast or possibly convenient, but its possible. While there are trade offs, if you’re afraid of driving on overpasses, perhaps side streets are a better option.

Having RA is similar. Just like there is an intricate network of transportation arteries in DFW, there is a wide range of treatment options for our disease. Some of them are really scary. They have side effects that none of us would want. But none of us want the effects of uncontrolled RA, either.

My one irrational fear is the fear of falling. Not of heights — of falling. I’ll leap at the chance to fly in a helicopter, but I simply will not climb a ladder to change a light bulb. I don’t think I’ll fall out of the helicopter, but I’m convinced that I’ll fall of the ladder.

So I contemplate RA and wonder if one of the emotions I feel is fear. Perhaps. Probably. But what of?

Looking closer, I realize that it’s that deep, dark, secret fear that each of carries within. [No, not public speaking or that underwear thing.] It’s the fear of the unknown.

I’m a micro-managing, type-A, control freak and not knowing what this disease holds for my future is scary. Will I be able to continue to work? walk? drive?

What I’ve come to understand is that like all other things in life, as the future becomes the present and things are revealed, I can deal with it. And like other things in life — relationships, career — it truly is a one day at a time situation. And I can do that. I can make decisions based on what I know today, how I feel today, that will hopefully make my tomorrows the best they can be.

Thanks for checking in.

Money and Medicine – Is Transparency the Answer?

While I’m offline for a bit, I thought I’d reprise some of my previous posts. I published this one last March. There’s no doubt that it’s a complicated question. These are just my views.

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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: http://www.medpagetoday.com/PublicHealthPolicy/PublicHealth/63550?xid=nl_mpt_DHE_2017-03-03&eun=g999342d0r&pos=2

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: http://www.janssen.com/us/us-pharmaceutical-transparency-report)  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.

View from the well

While I’m offline for a while, I thought I’d reprise a few of my past posts. This is one of my favorites from 2011. I hope you enjoy it.

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Sometimes, not always, but sometimes, I believe that living with a chronic disease is like living in a well.

  • Living in a well makes you different and can isolate you from other people.
  • To do anything “normal” you first have to get out of your well, i.e., get over the pain, fatigue, etc.
  • Sometimes you need mobility aids to get you out of your well.
  • When people realize you’re in a well, they talk down to you.
  • The longer you’re in the well, the deeper the well gets, i.e., the harder it is to get out of and the less chance there is for a full recovery.
  • It’s dark at the bottom of the well, but sometimes there is light in the form of a new therapy that offers hope.
  • People who have never lived in a well may care, but they can never fully understand the experience.
  • Being in a well is a true underground movement and connecting to other well-dwellers is a good way to keep your sanity and keep hope alive.
  • Exercise makes it easier to climb out of your well each day.
  • Only you have control over how deep and how dark — or how shallow and light — your well is.

I hope whatever you find in your day, it finds you well.

Thanks for checking in.

RA as a murder defense?

While I’m offline for a bit, I thought I’d freshen up some previous posts. I first published this one in August 2012.

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If you have tuned into the news the last few weeks, you can hardly have missed the story of Lois Goodman, the tennis referee who is accused of bludgeoning her 80-year old husband to death with a coffee cup, then trying to disguise the crime as a fall down the stairs.

As a defense, her attorneys claim that it is not physically possible that the 70-year old woman could have committed the crime. Apparently she has had two knee replacements and a shoulder replacement, and also suffers from rheumatoid arthritis, hearing loss and constant spinal pain that’s controlled by an electronic device implanted in her spine and is awaiting another shoulder replacement.

I’m not sure what wearing hearing aids have to do with her ability (or lack thereof) to murder her husband. (My husband quipped that it probably made it easier as she didn’t have to hear him scream …) My physical condition is not that much different from hers as I’ve had a hip replaced, a shoulder replaced, a knee replaced and two spinal fusions — as well as having been diagnosed with RA. I will tell you that she’s probably more capable of doing the deed after having replacement surgery than if she hadn’t. And she was arrested in New York after traveling from her home in California to serve as a line judge in the U.S. Open. Really? She can travel across the country and be prepared to work a major tennis tournament, but she is too frail to raise a coffee cup and hit her husband?

Don’t get me wrong, there are many (too many) people who, as a result of RA, are unable to do simple, everyday activities. (Not that bludgeoning your husband to death with a coffee cup qualifies as an everyday activity.) But Lois Goodman has apparently been living an active, productive life.

I resent her using RA as a murder defense.

I guess if anything good comes out of this, it will be that over the course of the trial, a great deal of light will be shed on the realities and disabilities of the disease. Maybe some people will come away more educated and with greater understanding of RA and what we, who have it, deal with on a regular basis.

Of course, if I were the prosecutor, I’d just point to all the RA medication ads that show people frolicking and playing golf and riding horses to prove that RA isn’t a “real” disease and that it’s easily controlled with medication.

Heaven help us all.

Thanks for checking in.

The way we were …

While I’m off the grid for a while, I thought I’d freshen up some previous posts. Hope you enjoy this one.

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I was in a shoe store last week with my husband. We were actually shopping for a pair of shoes for him (which is why a husband was in the store — as all the “wives” reading this roll their eyes). I saw Shoethis beautiful pair of heels and instantly fell in love. These are my kind of shoes. Even five years ago I would have bought them. They would have been paired with a sleek little suit for the office or something cute and cocktail-ish for a party. Regardless, I wouldn’t have walked out of the store without them.

However, a new hip and a new knee, along with RA in the joints of my feet, make it nearly impossible to wear 3″ heels. Ever. Again.

I do wear them probably a couple of times a year when there’s a particularly special occasion, but at the end of it, I’m always grateful to have them off.

You know, it’s not the big things in life I miss. I don’t miss my hip, shoulder, or knee which have been replaced. Those things hurt and I have assimilated the replacement parts as if I had been born with them.

It’s the little things I miss like not being able to wear really cute shoes all the time. Or not being able to run. And I don’t like some of the new things in my life such as never knowing how I’m going to feel in the morning. Or having to inject my self once a week — in the abdomen.

All of us who have RA have been robbed of certain things we love and been given dubious gifts in return. The worst gift of all is knowing that we will never, ever be truly well again. Even our best days are simply illusions which can and will be dispelled by the next flare.

But as dire as this sounds, all is not lost. Because without this sacrifice we wouldn’t stand a chance of ever finding a cure. If RA didn’t hurt, if it didn’t disable, if it didn’t kill, then no one care enough about it to find a better treatment or to search for a cure. And if I have to give up my shoulder, and my hip, and my knee to make it worthwhile for researchers to continue their quest, then I’ll gladly do it.

I just wish I could wear those really cute shoes in the meantime.

I hope whatever sacrifices you face today reap amazing rewards. Thanks for checking in.

Sometimes the Tide Brings You a Sail

While I’m off the grid for a while, I thought I would refresh some of my previous posts. Hope you enjoy this one.

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I enjoy the movie Castaway where Tom Hanks plays a FedEx executive that gets washed ashore a deserted island after a plane crash. After he is rescued and brought back to the U.S., he talks about the desolation and despair. But one day while he was stranded the tide washed up part of a Port-a-Potty, which he subsequently repurposed as a sail to his makeshift raft. He said that you have to hang on because you never know when the tide will bring you a sail.

I’m struck by a couple of things. First of all, life is what you make of it. I’d never have envisioned a plastic potty house as a life-saving tool, but it just goes to show, it’s all in your perspective.

Secondly, that Tom Hanks’ character was right. You never know what will be coming next that will completely turn the situation around.

My day started as a Porta Potty day — not the door, the contents.

But before long, some people stepped up to the plate to deal with some issues and my husband sent me a beautiful bouquet of red roses and stargazer lilies. And while I’m still in the cesspool, I’ve got some people starting to paddle.

My thoughts in general have been going down that path. The fatigue and increased Sjogrens have really bothered me and, coupled with some mounting issues at the office, I wonder why I don’t quit this rat race and stay home and take better care of my health. But then things tend to get worked through and it’s a week later and I’m still here cashing that paycheck.

I think with RA in general, you have to hang in there. There is so much research going on and new discoveries every day that you have no idea when that piece of porta potty you’ve been dealt will be transformed into a sail.

Here’s hoping you’ve got clear sailing ahead. Thanks for checking in.