In Her Own Words: A Young Woman With
Rheumatoid Arthritis Acknowledges Her Disability

Credit: National Institutes of Health.

How do young people cope with chronic, debilitating conditions, like rheumatoid arthritis and fibromyalgia? Patient POV interviewed Lisa Jaffe Hubbell, a young woman, who only last month acknowledged to herself, that she is disabled, and is unlikely to regain function. Lisa is also a successful writer and blogger, who blogs regularly at Landguppy Productions.

In this interview, she discusses her concerns about getting quality medical care, affordability of health care, and why the presidential election worries her.




Can you tell me how long you have had rheumatoid arthritis? Is this the key reason you are now disabled? Do you have other conditions that are contributing to your disability?

I was diagnosed 10 years ago now, and I think I always figured I’d get better. Or better enough to be able to do most of the things I want to do. Over time, as more and more drugs worked for a while and then failed – and none worked fabulously – I came to realize I’d never be the same. I’d never go for a long hike, be able to prepare for a dinner party without having a few hard days after it was over, go more than a day without a mid-day rest. I’m not the chief jar opener any more. I can’t always bend over to fill the dog’s water dish. And she’s big and pulls hard when confronted by a dastardly squirrel.  I can’t always hold her back.

My main diagnosis is sero-negative rheumatoid arthropathy, but I also have fibromyalgia, which rears its head when I have a flare. I also have an autoimmune thyroid disorder (Hashimoto’s disease).

What medications are you taking? Does your insurance cover these medications? Are they affordable?

I have had great medical coverage and mediocre coverage over the years.

The first few years, my insurance came from a small company and the copays became a significant burden. Biologics are thousands of dollars a month, and if I am responsible for a 10% copay, that’s hundreds of dollars. A couple of years I actually hit my stop loss limit, where you spend so much that the insurance company stops charging you copays. After that, I had insurance through Microsoft, which had no copayments. It was great. Now, I’m somewhere in the middle, with 10% copayments on my biologics –although I am enrolled in a program where the pharmaceutical company covers that copayment – and $15-30 copayments for other drugs. I have copayments for all my appointments, too.

My drugs change with my condition. Currently, I take Actemera, an infused biologic, every month. I take as little meloxicam as possible because my BP spiked about 18 months ago from the NSAID use and my kidney function started to look bad last month. I take Cymbalta and at night I take tramadol for pain. I’m off methotrexate because my liver function isn’t fabulous any more. My other meds are all related to side effects of the drugs I take for my arthritis. I take an anti-androgen called spirolactalone because my hair falls out from the atenalol I take for my blood pressure. I take omeprezol for my stomach when the meds upset it. One of my drugs – I have never figured out which – makes me sweat profusely, but only on my head. I’m not joking. Just my head. So I take a drug called glycopyrolate so that I’m not that sweaty girl when I go out in public. I also take fish oil, folate, B complex, CoQ10, a multivitamin, and because so much of what I take constipates me, a stool softener and Miralax.

Has dealing with insurance issues been difficult? How so?

My biggest problem happened at the end of summer, when a change of insurance companies forced us to complain a lot and often until they approved my infusion treatments. That I had been covered continuously and approved for the treatment by one insurer seemed to make no difference to the new one. My infusion was two weeks late, and a month later, I’m still trying to get back up to where I should be at this point after my infusion.

Is there anything that you’d advise people with your condition in terms of negotiating good healthcare?

Don’t be afraid to be a pain in the ass. And be sure that people understand that this isn’t just a little disease that causes pain. I have a shorter life span ahead of me, I am at risk for some pretty awful things like sudden gastric bleeds, sudden cardiac events, liver cancer. I could go on. This is a systemic disease that can impact not just my mobility, but my cognitive abilities, my vision. It will be, at least indirectly, the eventual cause of my death.

What kind of outside help do you get? If we lived in a more perfect outside world, is there any kind of help that you think you should be made available to you?

I have someone else do my garden and a cleaner twice a month. I pay for those services. I have a teenager who has to do a lot of fetching for me. Evenings are hard, and once I stop “doing” I find it hard to start again. I spent many years thinking I must just be lazy. It took a lot of therapy to stop those messages from running through my head. In a perfect world people would be more connected to their neighbors and none of us would be shy about asking for help. I’ve always been the helper, not the helped, so I don’t ask. I muddle through. My house isn’t as clean as it could be. I need the interior painted, but until I have 10 grand to spare, that won’t happen because I really can’t do it myself. Especially the taping off. Again, if I was more secure in my disability, I’d probably ask for more help. But that’s just too hard for me at this point.

As you became more disabled, have you had to make physical accommodations in your home, travel, work?  How easy or difficult were they to arrange? Emotionally, how have you dealt with these shifts?

I haven’t had to do much of any accommodating except for reducing the quantity of what I do. I use my teenager to bend over for me. I do find it hard to get into my car. I have people carry my groceries to the car for me. I try to avoid stairs. So if I go to a concert, I ask for disabled seating, which can be crappy, or can be with the sound guy (the best seats sound wise in the house). I haven’t taken a flight in a while, but I think next time I’ll ask for a ride to the gate and early seating.

Compared with other health problems like diabetes or hypertension, how do you think others look at rheumatoid arthritis?  Is there anything you would want other people to understand about this?

People don’t view rheumatoid arthritis as a bad disease. They hear arthritis and usually think “old people.” But that’s osteo arthritis. And while the joint damage is the same, the osteo version doesn’t come with other systemic problems.

It’s kind of invisible unless you are so sick you need a wheelchair or walker. People look at me in the disabled parking space and I’m sure some think I’m using my parents’ placard. But it’s mine, and while I don’t always need it, I usually use it. I view it as the only perk of being sick. I wish people understood how hard it is to just move – not always because of pain, but because of what doctors refer to as stiffness, but which I talk about in terms of feeling like I’m trying to move through thick mud or cement. And the fatigue is probably the most debilitating part of the disease.

How adequate are social supports in your life? In others with RA?

I have great friends and a wonderful boyfriend who understand what I can and can’t do. It can be an isolating condition, though, because you just don’t look sick.

Is there anything that you would want the world at large to know about a debilitating condition like RA and how you could live happier with it?

I think my biggest message is that when you see someone in a disabled space with a placard who looks like you, don’t assume they aren’t sick. When you see the house with the ratty yard that needs attention, don’t figure they are just lazy. The mom who never helps out in the classroom? You have no idea what her issues are. And ask if you can help with specific things. Asking if you can help with yard work, window washing, or something specific is better than telling someone to call if you need anything.

Because you live with RA, have you made any additional efforts to write a living will and advance directives than perhaps the next person not having RA?

I had a really bad flare last January and was sure I was going to die. I’d never felt that way before. So I redid my will and advance directives and trusts, talked to friends and family. I have every hope of living for at least another half century and try to live my life in a way to make that happen. I’m hopeful, though, not stupid

Are there transitions that may lie ahead that scare you?

I worry about what happens if Romney and the Republicans win. I haven’t gotten a divorce yet because I need my Wasband’s insurance. I can’t afford the kind of insurance I’d need to adequately treat my disease. I hope in 2014, the coming of insurance exchanges will allow me to divorce and find insurance that I can afford and that meets my needs.

5 Reasons Why I Find This Year’s Allergy Season
Especially Aggravating

The High Line, New York, NY

1.    Allegra, the non-sedating antihistamine has gone over the counter, with nearly psychedelic purple boxes knocking me down when I go into my local drugstore. It has also skyrocketed in cost.

That means people with allergies are paying far more than they were paying before. One aspect of this is called cost shifting in professional circles. But developments like this jack up people’s out of pocket expenditures. Bear with me: I don’t want to sound pedantic.

My local Walgreen’s  is selling Allegra for about $1.00 a pill, sometimes more, depending on the size of the package.   My friend on Medicare got Allegra for $6 per month before this switch. Now it is at least five-times that.

It’s not just Allegra. Zyrtec and Claritin went over the counter earlier. Even sold as generics, it gets pretty pricey (similar to brand).

The public needs to know more about how they benefit and lose when drugs are moved over the counter. I’ve heard that some health plans may compensate for out-of-pocket drug costs. I’d like to hear more about that from readers.

2.    Global warming experts say that this may be the worst allergy season ever, and as temperatures rise in the years ahead, we can expect more pollen, more headaches, and more congestion. It is not a pretty picture.

3.    Air conditioning is recommended for minimizing pollen exposure, but it is expensive. Con Ed, one of the major gas and electric utilities, plans to raise rates by 12% on top of 4%, already approved this summer. Sure I can be green and minimize usage, but I might get sick.

4.    Why do I have to live in or close to allergy hot spots? A few years ago, I went to back-to-back medical meetings in Atlanta GA, where I had an unrelenting post-nasal drip/allergy cough.

Today’s allergy hotspots put many places in the northeast at the top.

5.    And I just love the advice to avoid exposure to allergens that give you a hard time. Of course, that makes logical sense, but I don’t want to miss cherry blossom season and seeing everything in bloom.  It makes me feel like an invalid.

People enjoying the cherry blossoms, near the Central Park Bridal Path

New York City is thankfully planting millions of trees the next few years. This could be a disaster for me…but I would rather see greenery than concrete.

Some Caveats About Allergies

I do think that some age-old drugs that are very cheap work fine for people.  Many times, doctors don’t even mention them. Some may not even put people to sleep. Diluting allergens with water in your eyes can be a low-cost way to help you out. Some people swear by nettipots, using nasal irrigation, which clean out your sinuses. I must confess I have been a bit daunted by the prospect. Various nasal sprays, some with cortisone, others not, help many people. It’s just that you can feel very draggy with allergies.

There are plenty of places to look on the web for information on allergies so I am cutting this post short, simply focusing on what is making me especially aggravated this year. What about you?

What the Macular Degeneration Drug Trial Means

How you see with advanced macular degeneration, National Eye Institute

Age-related macular degeneration is a leading cause of vision loss and blindness. The advanced form of the disease affects 1.6 million people in the United States.  That’s why results from the first year of a two-year clinical trial that tested medications for the wet form of age related macular degeneration (AMD) look promising for patients:
1.    In comparison with previous treatments, Avastin and Lucentis are the first treatments to ever improve vision in patients with age-related macular degeneration;
2.    Drugs used in the past (Macugen and Visodyne) only slowed the progression of age-related macular degeneration.
3.    Testing various regimens, including monthly injections versus variable (stopping the injection if no fluid builds up in retina), investigators learned that they could give injections into the eye less frequently than once a month because patients getting the injections did not build up fluid that quickly.  On average, patients needed injections into their eye 7 times during the year, instead of monthly (or 12 times).
4.    The two drugs had about the same effects on visual acuity, when administered on the same schedule.
5.    The drug’s cheaper formulation (Avastin), cost $50 per injection, compared with Lucentis, at $2,000 per dose.
6.    Safety considerations are still being evaluated. Serious adverse events (primarily hospitalizations) occurred in 24 percent of patients for patients on Avastin, compared with 19 percent for patients on Lucentis. According to the study, these safety concerns were not identified in previous studies of Avastin, when used to treat colon cancer. Patients are now being followed for a second year and safety will continue to be monitored.

A Patient’s View of the Clinical Trial

I spoke with Mara Coon, participant in the drug trial at the University of Wisconsin Madison site, for the Comparison of Age-related Macular Degeneration Treatments Trial (CATT). She is 74, was diagnosed with the wet form of age-related macular degeneration two years ago, and she told me that she let her first eye go before she entered the trial. She likes to do a lot of reading and knitting. Because the trial has a year to go, she does not know which drug she is taking. Her vision was 20/60 when she entered the trial, but after a year on the injections, it varies between 20/20 and 20/25. She was quick to tell me: “I am not sure whether everyone responds as well as I do,” a point of view that I think should be underscored. She likes participating in the trial, saying that “if it helps someone down the road, I am happy.” Suresh Chandra, MD, professor of ophthalmology at the University of Wisconsin, pointed out that is the “first time that we have seen a visual gain.”

Avastin’s History

Readers may recall that only a few years ago, Avastin, given at 500 times the dose for macular degeneration, was considered a miracle drug for advanced breast cancer. The drug costs for a year of treatment with Avastin average about $90,000 to $100,000. In the setting of breast cancer, Avastin has had a rocky road: to date, benefit in progression-free survival shown in the original study has not been replicated. Moreover, using disease-free survival, surviving without evidence of disease, not overall survival, or how long the patient actually lived, is a controversial measure of a drug’s effectiveness for terminal cancer.

Avastin was considered a breakthrough drug for treating cancer. It has been studied in a huge number of trials, both in cancer and for other diseases that depend on a rich blood supply. Avastin’s mechanism of action is to prevent new blood vessel growth that allows cancerous tumors to develop and and spread. In 2004, the FDA approved Avastin for the systemic treatment of metastatic colon cancer. In the course of using Avastin for colon cancer, investigators noticed that the drug also helped block blood vessel growth in age-related macular degeneration. Avastin was not approved by the FDA for the indication of AMD, but in 2005, Lucentis was established as highly effective for the treatment of wet AMD in clinical studies. Avastin was approved by the FDA in 2006 for AMD.

Cost Considerations

Cost and pricing are thorny issues. For macular degeneration, Avastin costs $50 per dose, compared with $2,000 per dose for Lucentis, but the outcomes are essentially the same. Many doctors do not want to discuss costs with patients. Perhaps patients also feel so removed from prices unless they have high out-of-pocket costs that they don’t think much about them either.

Several ophthalmologists declined to be interviewed for this story. The American Academy of Ophthalmology issued a press release the same day as the study was released, titled “New Study Offers Hope and Treatment Choices for Macular Degeneration.” The press release also states: “For unknown reasons, some wet AMD patients do not respond to one drug but get positive results with the other. Eye MDs need the flexibility to prescribe either medication to provide the best care for their patients.” This needs to be explained fully so the best decisions are made.

Patients should be aware that some ophthalmologists are consultants to drug companies or medical device manufacturers. Many doctors who work with industry do so because they want to participate in developing advances in their field. Yet these issues are not black-and-white. The public pays for these advances; drug companies invest in them, and reap the profits or take losses.

Pricing Macular Degeneration Drugs

Thus far, many articles and blogs have discussed the two drugs as if they are very different. However, they are made from the same monoclonal antibody; they are not different drugs at all. Ranibuzumab, the generic name for Lucentis, is made by customizing the molecule in bevacizumab (Avastin). According to the package inserts, they are manufactured in different cell cultures. The actual manufacture of Lucentis should not be that much more costly, according to several physicians, who asked that I not name them. What undoubtedly goes into price are research and development costs to bring the drug to market, including amortization costs (reduction in operational costs associated with evaluating the drug), patent life, and drug competition. Both eye medications are made by Genentech.

Pricing for this group of macular degeneration drugs and drugs with similar impacts, merits, and costs are likely to be debatable, both in the United States, which is struggling with health expenditures, as well as resource –poor countries.  The burden of having advanced macular degeneration is blindness. Around the world, numbers are enormous.

How will countries pay for drugs like this and many more in the pipeline? “Insurance companies are going to say: ‘Why do you want to use Lucentis?’” said Chandra. Even though he acknowledged that Genentech has invested in research, he added: “We are talking about billions versus millions.” He said that the trial results offer a “big sigh of relief for developing countries.”

Sean Tunis, the founder and director of an independent nonprofit organization, the Center for Medical Technology Policy, and a proponent of what is called “value-based” or “outcomes” pricing, does not think that the horse is out of the barn. In a nutshell, value-based pricing would consider payment for clinical outcomes. Tunis does not think that the “value-based price” for Avastin is $50, and he called reporters who stopped there in their cost discussion “hypocritical.”

“This is the first treatment to ever improve vision for macular degeneration,” said Tunis.” That is worth a lot more than $50 per dose.” The cost was figured, based on per milligram, not per outcome, he explained, proportional to say, how much less is needed to inject into the eye than is required for cancer indications.

There is a movement afoot in healthcare reform to pay for care, based on how well interventions do in achieving the best clinical outcomes, and paying attention to clinical outcomes that are most important to patients. Tunis also pointed out that there is a “small safety signal,” referring to the 24 percent versus 19 percent hospitalization rate in the trial.

This is a pretty complicated story. It is far from over. We have only seen safety and outcomes with these drugs for one year. It’s a start. What do you make of it?