Detente

n. the easing of hostility or strained relations

I went to the World Congress’s Patient Advocacy Summit last week. It was part of four concurrent conferences addressing advocacy and clinical research. My guess is that the majority of attendees were from pharmaceutical and biomedical companies, both big and small.

For all of you patients reading this, I would also guess that your reaction to that last sentence was an almost involuntary stiffening of the spine and defenses locking into place. If you’re anything like me, your perception of the pharmaceutical industry is mixed. We are grateful that these companies are working on things to save our lives. Angry that the price often limits the most cutting edge of these treatments, without consideration of a patient’s financial situation or level of need. They also haven’t exactly been famous for including us in the development of their new products. Kind of like a toy company failing to consider kids. Doesn’t make a lot of sense, does it?

But I learned something last week. When I first read about the Forum, I thought the conference would be filled with people like me – civilian patient advocates. There were a few, but the patient advocates who filled the ballrooms in Philly were from the pharmaceutical companies.

Before last Monday, I didn’t even know that patient advocacy, outreach, or relations were careers in this industry, but there were lots of advocates there. And they weren’t just there to pay lip service. These advocates were sincere in their desire to close the gap between patients and their companies.

They acknowledged their own role in the disconnect between patients and researchers, and brainstormed ways to get patients more involved in clinical trials at every stage. One way was illustrated by the Parkinson’s Foundation, which has developed a program that works very well partnering researchers and patients. The Foundation keeps a database of advocates that the Foundation knows well enough to assign to specific studies when researchers ask them for patients who would be interested in helping to develop the study.

Pharmaceutical companies, academics, disease association representatives, and patients talked about adherence, and the barriers that keep patients from following drug regimens, including cost, access, even a little about mental health (which I believe is a big barrier to adherence – sometimes negative feelings prevent us from making the choices that are in our best interests.)

I met advocates and researchers from Pfizer, Sanofi, Novartis, Horizon, and Boehringer Ingelheim. There were a lot more I didn’t meet. When I did my follow-up, I got a better than 80% reply rate to my emails. They didn’t have to do that; there would be no consequence if they didn’t reply, and I promised no reward. This reinforces that their interest was genuine.

High drug costs are still a point of contention, but involving patients in the development of new drugs and therapies is a huge step in the right direction. If we patients can find a larger role in clinical studies aside from being subjects, we will all end up with more effective and efficient solutions to some pretty heavy problems. Who would say no to that?

Interested in growing the relationship between pharmaceutical companies and patients? Consider participating in studies to help others whose chronic disease patterns may look like yours.

An Open Letter to CIGNA

Dear Mr. Cordani,

I hear you are buying Express Scripts. This letter is a plea from a former Express Scripts customer to closely scrutinize their business practices, which, during the time I patronized them, were burdensome at best and actively harmful at worst. I am not talking about a “simple” denial of services, but policies that substituted the company’s experts, whomever they were, for both the judgment of a provider who knew the case, and long-accepted medical standards.

Several years ago, my former employer switched pharmacy benefit management (PBM) organizations after only three years, from Express Scripts to CVS. For a company with over 20,000 employees, that was an incredibly short span for such a cumbersome change. I suspect it had more to do with employee complaints than some kind of better deal. In my account alone, the lighter transgressions consisted of: dropping two asthma medications in the space of a year, discontinuing access to the type of insulin that was specifically engineered to work well in insulin pumps, and changing the policy for blood glucose testing strips to go from rounding up to rounding down. The latter cost me 100 strips per quarter, which is a lot for someone who tested 8-10 times a day.

With my background, I always understood that plan coverage fluctuates. It is the literal cost of doing business. The real issue with all of those changes was that they were implemented in the middle of calendar years without notification. In fact, I knew nothing of any of these changes until I tried to renew the various prescriptions.

But as I mentioned, this was not the most egregious thing Express Scripts did. No, that label is reserved for the fiasco that occurred around Aranesp. Aranesp is an expensive anemia treatment often administered to cancer patients by a physician to counteract the effects of chemotherapy. In July 2012, The Washington Post published an expose detailing how Amgen, which makes Aranesp, was inflating costs, and some medical providers were purposely misusing it to make a bigger profit. As a result (presumably), Express Scripts acted to limit access to Aranesp across the board, lumping all patients who used it into one group.

Huge violation all the way around, I know, and all of those who were taking advantage of the system should have been investigated and punished. However, there were those of us with milder conditions than cancer or kidney failure (another common cause of anemia) who self-administered very small doses. We required a blood test and prior authorization for each prescription refill. Under those circumstances, the chances of us abusing our insurance plans was virtually nil.

Shortly after that article was published, Express Scripts instituted a policy where they decided they knew better than the entire medical community, as well as the patient’s (sometimes multiple) doctors, who were more familiar with the details of individual cases. Against the protests of both patients and doctors, they lowered the qualification for receiving Aranesp from a hemoglobin result of 11 to a 10, effectively putting it out of reach for those of us without severe anemia. No matter how many appeals Express Scripts received, they would make no exceptions for me or any of my doctors’ other patients.

Maybe to Express Scripts, it didn’t seem like such a big deal. It was just a point’s difference. Many of us with chronic condition-induced anemia fell into that category. We had mild cases, but we couldn’t fix it with more leafy greens and red meat. And I can’t take iron pills or liquid. They all give me a rash. Ironic, isn’t it? An anemic who can’t tolerate taking iron. I even tried putting the liquid in Jell-O. Tasted like I was sucking on pennies. And it still gave me a rash.

What did that mean for me? Sometimes I struggled for breath, and I felt sluggish and foggy all the time, which affected my job performance. It wasn’t a great quality of life then, and so easily fixable. The low likelihood of misuse should have warranted at least an individual assessment. But no, Express Scripts lumped us all together, as if all patients and all diseases were equal. But we are individuals, with individual needs and diseases that are as unique as fingerprints.

As far as I am concerned, what Express Scripts did in 2012 was ethically and morally wrong. So, please, as our healthcare system turns to a more value-based, patient-inclusive model, I implore you to closely evaluate all of Express Scripts’ harmful policies and decide what is right, not just for your business, but also for the patients who have no other choice but to use it.

Sincerely,

Claire Sachs

Founder, The Patient Advocate’s Chronicle

Just Say No To Drugs. If You Want.

Please note: This post is not medical advice. I am not a doctor and this post should not take the place of consultation with your medical team. Also, this post is not directed at people who deal with chronic pain.

I’ve had the same conversation with two friends in the last two weeks, so I thought I’d share.

Both were going through some temporary medical issues that came with a lot of pain. One – let’s call her Sara -- was in a bad car accident and was prescribed Percocet for musculoskeletal issues. The other – let’s call him Mitch -- was having a dental procedure and was prescribed high doses of ibuprofen. In situations like Sara’s and Mitch’s, there is a balance that needs to be achieved between pain management and functionality. Doctors don’t necessarily consider your daily functionality when prescribing pain medication, but if you have a job and/or kids, or if you are anyone who doesn’t want to miss out on parts of your life, you need that balance.

Sara and Mitch were both struggling with a doctor’s instructions when they talked to me. They couldn’t function on the dosages they were prescribed, but their pain was strong enough that they needed something to manage. Sara was also afraid of developing an addiction to the Percocet.

This is what I told them both:

• You can say no. At any time during the course of your treatment, you have the right to ask for something that works better for you. If you know you don’t react well to a particular painkiller, ask your doctor for something lighter. If you don’t realize it until you get home, don’t wait until you see them again. Call the doctor’s office and request a different prescription. Sara was so much happier when the doctor prescribed Darvocet, which is a step down in strength from Percocet, because it managed her pain and she wasn’t sleeping 20 hours a day.
• You don’t have to take the whole amount. If you feel like you can’t function on your prescription, work with your doctor to find the right dose, especially with a medication you can get over the counter in smaller doses. Ask your doctor if you can start with a lower dose and, if yes, get a new prescription or cut the pill in half and take the smaller over-the-counter doses as needed or start pushing the doses farther apart. Keep a journal of dosages, effects, and times so you know whether your adjustments are working. Together, you and your doctor can find the appropriate medication and dosage for you to manage your pain and your everyday life.

For chronic and autoimmune patients, taking the lowest dose of painkillers possible can be especially important. While generally safe, painkillers can negatively affect certain chronic conditions or cause further damage to organs that are already impaired. When I was diagnosed with kidney disease, my doctor told me that frequent use of painkillers other than acetaminophen (Tylenol)-based products could make it worse. In the last 12 years, I have only taken ibuprofen (e.g. Advil), naproxen (e.g. Aleve), or aspirin two or three times. There's one notable exception; diabetics are at very high risk of heart disease, so I take baby aspirin (81 mg) every day to help protect my heart. It makes me nervous, but with proper monitoring through blood tests and oversight by my doctors, I decided I was willing to take it.

The bottom line: if your doctor prescribes something you don’t think is right for you, you are allowed to ask for their help finding a better way. If your doctor won’t work with you, it’s time to find a different doctor.

When do you go to the doctor?

Not those appointments. I mean the ones for regular person problems. Many of us with chronic and autoimmune conditions lead a double life, one filled with people you work with and people you love, the other with people who know you on a level where you can’t decide whether it’s good or bad that they call you by your first name. Those are your doctor(s), their staff, even the pharmacist who sees you on a monthly basis. It’s like a secret family you only discovered upon your diagnosis.

Set those aside. Let’s talk about all the times you knew you should have gone to your General Practitioner (GP)/Family Doctor/Internist, whatever you want to call it, and didn’t. It was too much of a hassle, or you were sure it would clear up soon, or you thought you would be fine without a visit, or even a call or email.

We all do this – rationalize our way out of doctors’ appointments we don’t want to go to, condition or not. Healthy people do it because they think they don’t need to. We do it because it seems trivial compared with the stuff we deal with daily.

I once ignored the need for a GP. But my specialist got tired of treating my sniffles and coughs. He gave me the information for his GP with the thought that sending me to his doctor would get me over my pickiness. Well, it did, but I waited so long that the doctor he referred me to retired. It was sheer luck that the one who took his place was such a good fit for me.

I remember going in to see him for an ingrown cuticle. I felt like an idiot making a doctor’s appointment for a boo boo on my finger, but it was swollen and I had started avoiding using it when I typed. When I said that to my doctor, he laughed and asked me if it hurt. Of course it did, which was why I was there.

Or the time I had a sore throat for over three weeks. I had a fever for the first few days, but it went away and I didn’t check again. I thought the remaining symptoms were allergies, but I finally got tired of my usual haphazard mix of prescription and over-the-counter meds not working. Turns out the fever had never actually gone away. Which is not good.

You know how your body works, and you know when something isn’t right. Maybe a medication needs adjustment or your biorhythms have changed or you’re just not feeling well. Or you have a boo boo that won't go away. Give it a reasonable amount of time (a few days), and if whatever it is doesn’t show signs of recovering, get help to figure it out. The “normal” stuff always hits us harder because our immune systems are busy fighting themselves. Few armies can win a war on two fronts without help. That's what your doctor is there for, and it never hurts to ask.

Paper, Paper, Everywhere (Part II -- Care Coordination)

Reader Kimberley Dahline of Finally Filed helps patients and caregivers keep track of their paperwork. She wrote in two weeks ago asking about how I keep track of mine (not just when I'm proud of my labs and pin them to the wall of my office cubicle.). Last week, we covered billing paperwork. This week we are talking about medical records.

Care Coordination

This is for when you have multiple providers who may not have anything to do with each other, but you need someone besides yourself who knows the whole story. Sadly, this one is on us, too.

Step 1. Coordinate visits for your convenience. I have a dozen providers, many of whom require different sets of labs. In order not to get stuck like a pincushion more than necessary, I coordinate them. I schedule all the appointments within a week or so of each other, and I ask for future lab orders so I can get them all done at once and so that all of my doctors will be able to see all the most recent results. I keep the orders in my car in an effort not to lose them over the three to six months between visits, but the front desk staff has gotten used to me calling to have them sent again.

Step 2. Get a General Practitioner (GP)/Internist. I shamelessly use mine as the ringleader in my circus. Everyone with multiple providers should have a ringleader – someone who has a bird’s eye view of all of your records. For him to be effective, I have to sign a release form telling the lab company and other providers’ offices to forward all results and notes to him.

I know what you are thinking. Another doctor? Really?

Once I didn’t think I needed a GP, either. But my endocrinologist (diabetes doctor) was tired of treating every sniffle and wound, so he sent me to his. I waited so long that the recommended GP retired, so I made an appointment with his replacement, who happened to be so good that I will travel across two states and the District of Columbia for my annual physical. Once, when I had an incident at work, I called my GP, who was able to look at all of my records and see that I had forgotten to tell my nephrologist (kidney doctor) that I’d had asthma when I was a child. It had been several years since I had been treated for it and I didn’t realize that it was still relevant. The nephrologist had prescribed beta blockers for hypertension, which had caused severe bronchoconstriction (constriction of the airways in my lungs) as the dose increased. My GP was able to look at the entire chart and tell me to stop taking the beta blockers immediately. The emergency room I’d gone to diagnosed it as a “cardiac incident” and let me go without changing my medication.

Step 3. Proactive paperwork. Doctors' offices and labs will not offer you a Health Insurance Portability and Accountability Act (HIPAA)-compliant records release form. (Learn more about the importance of HIPAA here). They usually have one, but you have to ask for it. If you do it this way, it's an annual process, like when you have to show proof of insurance every year. 

Sometimes it’s just easier to fill out a standard online form on your own and carry it with you to new providers. You can find one here. On this form, check field 2, option 2 to designate an unlimited period of records release. You can add to, delete, or reword any section to suit your needs, just be sure to initial any changes you make. Also be sure to keep copies for your records in order to get what you want while legally protecting all parties.

Tips and Tricks

There aren’t many tips and tricks for this one. More like one tip and one trick.

· Make friends with the front office staff. I can’t tell you how many times, and in how many offices, these folks have made the difference on a short timeline or even getting my request addressed at all. This includes the offices where I have a direct line to the doctor through access to email, cell phone, and/or text.

· If you get pushback from your provider, be firm. Tell them that you need someone who can see the whole picture, including those things that may not be related to your chronic condition. As mentioned above, drug interactions area good example of that kind of situation. And if there is still pushback, tell your provider that you are perfectly willing to use them as the repository for ALL of your information, and to see them as you would a GP -- for every sniffle, cough, and boo boo. This is usually a fairly good deterrent.

The Energy for Outrage

I don’t often have the energy for outrage. I balance a slate of autoimmune conditions, a full-time job, this blog, and an active personal life. It usually takes more than the energy I have on any given day. There’s never a lot left over.

But I went to a conference last week, Health Datapalooza, and one story reached down and dredged all of my outrage reserves.

There had been considerable discussion around data transparency, especially regarding patient records. Patient records are the paper or electronic notes taken by each provider you see: doctors or hospitals, nurse practitioners, physicians’ assistants, nutritionists, physical therapists, psychologists, anyone in your medical life. There are test results, medication lists, condition status notes taken during the appointment, instructions to the patient, and other highly personal information.

These records can be vital to tracking the patterns of your condition, and may be necessary foundation if you begin a course of treatment with another provider or seek a second opinion. With access, you can also make sure that the official records of your condition are accurate. I didn’t realize that, until recently, those records were not considered property of the patient, but rather the provider.

I have not been in a situation that required my medical records. When I was a kid, I had a few doctors who were less than competent, but the medical bench where I lived wasn't deep enough to offer the expertise for a second opinion. Now, I am so particular about my providers, I haven't needed one. Besides, my doctors now either send me their notes after each visit, or give me access through a patient portal. The closest I’ve come to wanting my records is a sort of nostalgic desire to see the records from when I was in a wheelchair. (Back then, I wanted no evidence that it had ever happened.). But most hospitals and practices do not hang on to medical records for 30+ years.

I had heard some discussion about records transparency – liberating your data -- throughout the conference, and in a Friday morning breakout session about integrating patient voices in data, the problem was brought down to a personal level. During the Q & A session at the end, a woman talked about her daughter’s rare condition. In the universe of rare diseases, it is even rarer to find local physicians who have the necessary experience to diagnose, let alone properly treat the patient’s condition. Often, patients bounce from doctor to doctor to doctor, looking for answers and relief. Each doctor has a separate set of notes.

The woman described the situation of one family with a similarly diagnosed child. They were seeking their child’s complete medical records from a hospital so they could provide them to another specialist. The hospital said they would be happy to provide the records, for about $1,000. The fee was for administrative costs, they said. How many people dealing with chronic conditions do you know that have a spare grand for something like that? Probably no one, and the lack of access or a delay could mean the difference between life and death. At the very least, it could affect the patient’s (and the family’s) quality of life.

I was outraged. I understand that there is a cost for the staff to make copies, but where is the sympathy, the understanding of possible consequences to the denial of access? These people are medical professionals. Was there no way to send the records immediately, and work out the details afterward? The sad truth is that if a doctor’s office were to make the request, there would be no issue. There is an understanding of reciprocity in many cases. But because it was the patient making the request, it was a ”service.”

The group ended up receiving a grant through the Patient-Centered Outcomes Research Institute (PCORI) to hire an investigator. The investigator, who had the time to harass the doctors’ offices for the patient records, was successful.

Luckily, there is a push to change this situation. The history of the issue is long. One of the most pivotal events came in 1996, when the Health Insurance Portability and Accountability Act (HIPAA) gave us the right to see and receive copies of our medical records. We can review them with our doctors, check for accuracy, and have more in-depth discussions about where our conditions stand and where to go from there. Since then, slow but steady progress has been made toward open access. According to OpenNotes, an organization working toward unlimited patient access to their records, 12 million patients across 20 hospital systems can now view their medical visit records. This number continues to grow daily.

If you would like to find out how to access your own records, please visit some of the resources below:

Blue Button: https://www.healthit.gov/patients-families/faqs/how-can-i-access-my-health-informationmedical-record

OpenNotes: https://www.opennotes.org/notes-you/