Health Insurance Woes

Isn't this exactly what health insurance is for?

Yesterday evening I got to meet Gracie's friend Riley and her family from Colorado. Riley is an adorable little red-head with pretty eyes. She was so cute. She showed us her bellybutton, her nose, ear and toes. Very smart!

After speaking with the family, it sounds like they've had a hell of a time dealing with this illness. Riley has been getting ERT treatments for a while, but their insurance company (Sun Life out of Boston) has not yet approved the transplant procedure. Given that two other kids are at the RMH with the same disease and have been approved by their insurance company, it's that much harder for the family to swallow. Sun Life is citing a stop/loss policy condition or something as the reason to not pay. What I thought was strange is that Sun Life hasn't committed one way or the other. They say they *might* cover it, and they might pass the bill on to the dad's employer. I can't quite figure that one out.

Riley's dad has clearly been around and around with them, and the docs and nurses at Fairview/Univ of MN have been using everything in their arsenal to get them to commit to covering. It's just such a shame, because this is exactly what insurance is for. It's supposed to kick in when something totally unexpected and astronomically expensive happens. That's why we pay into in, even when nothing happens over the course of 1,2, or even 10 years. Yes?

Anyway, the insurance company says that the treatment is experimental, ever though it has been done for 20+ years. But because there is a clinical trial associated with it, they call it experimental (regardless of whether they enroll in the trial). I wish I could help them. Maybe I could pull a list of a bunch of other ongoing clinical trials. I wonder if they cover drug-coated stents for heart disease? I'm sure there are countless trials underway for other established treatments for more common conditions like heart disease, asthma, even erectile dysfunction. I bet they cover those treatments. It's a numbers game. The thousands of Sun Life members who have those conditions would run them out of business otherwise. Just because a condition is really rare, doesn't mean that treatments for those diseases are not proven and established. But because it's so expensive and there are so few members impacted, they can get away with screwing you.

If anyone know anything about insurance companies, how they work, how to respond to them, or has any recommendations for Riley's family, please let me know. In the meantime, keep her family in your thoughts.

I think Dr. Orchard sent a letter to the Boston Globe. If and when it's published we'll share it with you.

Thanks for the Comments

Dear family and friends:

Just wanted to send a quick thanks to all of you who have emailed and left comments on the blog. It's motivating to know that people are reading it, and that keeps us posting more and keeping you all informed. In fact, it's the only way we know anyone is reading it. :)

Please feel free to comment when you want to, even just a hello and we're thinking of you. It's great to hear from you.

xoxoxo

Duke vs. University of Minnesota

Big decisions: I think we are currently leaning toward Univ of MN, but deciding on the right place is tough. We have criteria beyond what is listed below that incorporate a lot of care coordination needs and multi-specialist care, beyond just the transplant itself. This is still not a fully developed summary, but here is a brief comparison of the Duke and University of Minnesota programs:


Duke:

• Heavily favor cord blood over bone marrow for transplantation
• Do not offer combination ERT/transplant. They have a clinical rationale for this.
• Experience: Transplanted >50 young children with MPS I and >160 children with metabolic diseases
• 85% transplant survival rate

University of Minnesota:

• Offer both cord blood and bone marrow for transplantation
• Start ERT prior to transplant, in an attempt to head off non-neurological deterioration while searching for a cord blood / marrow donor match
  
• Transplanted >80 kids with MPS I. Not sure of other metabolic patient transplant experience.
  
• 88% transplant survival rate

Tomorrow Sarah and Jimmy will be talking to the transplant physician, so they'll have an opportunity to ask questions, and discuss the pluses and minuses of combination ERT/ transplant treatments. We'll also try to catch up with Duke tomorrow to find out more about the treatment philosophy there.

Choosing Your Physicians

I hate to be a complainer, but I am fairly critical about many things. One pet peeve is clinician bad attitude, behavior, and bedside manner.

I love medicine. I'm a believer in science. I am astonished by the pace of change and rapid innovation in curing what previously seemed incurable. What folks in the medical profession accomplish day to day is remarkable, and I personally admire--and somewhat envy--the gifts they give to patients and families.

That said, nothing gets under my skin more than a callous, insensitive physician. I understand that they have personal lives and unique stressors, and they have bad days just like everyone else. However, I can't fathom the amount of stress they must be under to forget that a real human is awaiting your gospel - diagnosis, treatment options, timelines hanging by their fingernails every second that passes by. This is day to day for the doc, but life and death for the patient and family.

While Shands is a great regional health system, and serves the area well, it's clear to me why they aren't a national health care player. Based on my personal experiences with Shands back in the 1990s, as well as the experiences of the rest of my family, I'll probably never recommend or use them for any non-urgent care.

Granted, my exposure is limited, but it only takes a few bad impressions to drive someone away forever. Based on our experiences (these are gross generalizations. i have no doubt there are great physicians and great work at Shands, I've just not been lucky enough to find them):

• The physicians have horrible bedside manner
• The physicians are not accommodating, particularly regarding scheduling. Sarah's genetic counselor "couldn't fit her in" until March 18th. Ridiculous.
• The physicians are not proactive about presenting what cutting edge treatments are available, or where patients might find the information.

In fact, physicians at Shands, in my eyes, epitomize a couple of the problems in medicine today: First, the snail-like distribution of knowledge and new research findings. It should've taken those physicians a day or less to give a complete review of options and outcomes for Gracie.

Second, the physicians don't think that you know that you have a choice. They don’t think you’ll go see someone else. They don’t realize that they are running a business that requires attention to customer needs, and yes, customer service. There is no way Sarah and Gracie are going to wait six weeks to see that physician. Back in 1991, my physician at Shands didn't think that his horrible bedside manner would cause my dad to tell him where to stick it, driving us not only to another physician, but another hospital.

These people seem to be stuck in the world of Marcus Welby, where the physician is the owner of knowledge, and therefore the owner of the physician patient relationship. Those days are (or should be) over. Today, information abounds. We can all be informed, and we should turn the tables and choose our relationships and our physicians carefully.

How to: Making initial contact - sample

Here is a copy of my initial note to the research physician at the University of Minnesota. He called me within a few hours of sending it. Key points: keep it short, express admiration and interest in their work, create urgency, and include contact information.


Dear Dr. Orchard,

I hope this message finds you well, and thanks in advance for you time. My younger sibling, Sarah White, learned today that her 7 month old daughter has MPS-I. I'm writing to learn about the enrollment process for your clinical trial (NCT00176891), and collect any information I could pass along to my younger sister and her current physician.

Both myself and my other sibling (copied) have considerable experience in the health care industry, including some research experience. I'm familiar with the phenomenal outcomes for children with other genetic conditions (CF, in particular) following treatment at the University of Minnesota. We were excited to see your ongoing trial for MPS-I patients and would love to learn about your work in greater detail.

Best regards,

Mack Kelly

(Add Contact Info)

How to: Fast Track to Top Care

I've already heard from many people how lucky Gracie is to have me as an uncle because i have connections in the health care field, and I am so resourceful, etc. They are right. She is lucky to have me as an uncle, but not because of my health care knowledge and connections. How about, just because I'm cool. :) As much as I like being referred to as a hero, finding the absolute best providers for rare conditions is not as hard as many may think. A real hero can help others who are in similar situations. You know the saying, "Teach a man to fish..."

Below I've outlined a brief list of actions that will speed up your search for the best care:

1. Search for an online support group or society. Support groups should be easily found on the first page of a google search for the condition. Usually they are great for patients who wish to communicate with others who've "been there before." In this case, finding an online community where patients share stories and comments was not fruitful. I needed results fast, and didn't want to wait for folks to check email and get back to me.

The MPS Society is a bad example because the web page is awful. I scanned it for useful content and information, but found no list of providers, no good educational content, nothing for the newly diagnosed, and only a single "coping with" paper to download which scared the crap out of me rather than provide any sense of hope. It was much more like a "tough love, go buy some chew toys" paper. The entire site struck me as very out of date. Seems they've done no research of their own in the last 5 years to improve value of information.

So, that grim and pathetic site pushed me to step 2 much more quickly

Step 2 - Mine the recent academic literature. If the condition isn't rare, than there may be an entire journal dedicated to the disease. If not, there are other ways to track down the best. If there is a "good thing" about a rare condition, it's that there are usually only a handful of groups conducting and heavily publishing research on efficacy of different treatments and outcomes for the condition. This will likely narrow your search to no more than 3 or 4 academic medical centers.

Note: google searching is not the answer. You really need a focused search engine to find the best work. Pubmed http://www.ncbi.nlm.nih.gov/PubMed/ is probably the most comprehensive and widely used search engine in the academic medical community. It's free to search, and easy to use. Just type in the name of the disease (MPS-I) and the words "treatment" and/or "outcomes" and you should get a long list of published studies with frighteningly long and confusing titles. Click on a few that make the most sense, but only if published in the last few years.

In the example below, I've highlighted the name of the journal and date published in blue. The link lists the last names and first initial of the primary research authors. If you click the link it will take you to an abstract (or short summary) of the work. The full articles are typically only available for purchase and run around $20 each. Good news is, you don't need to actually read them, at least not at first. This is just to find the right people to talk to. Articles themselves will likely make no sense to most folks anyway, as they are intended for other academics and clinicians and written in medical-ese.

Bjoraker KJ, Delaney K, Peters C, Krivit W, Shapiro EG.
Long-term outcomes of adaptive functions for children with mucopolysaccharidosis I (Hurler syndrome) treated with hematopoietic stem cell transplantation.
J Dev Behav Pediatr. 2006 Aug;27(4):290-6.
PMID: 16906003 [PubMed - indexed for MEDLINE]

Ayway, open 2-3 of them and see where the authors work (Make sure they are talking about patients, and not rats or pigs or pine trees. Unfortunately, all of the research is lumped together). If there are multiple universities or hospitals listed, which is listed most frequently? If you can't tell, look for the first person listed who is a nurse (look for "RN") and they are most likely located at the primary research institution. If you still can't tell, give the organization a call.

3. Search for clinical trials. This serves the exact same purpose as the literature search. The institutions with active clinical trials are likely at the forefront of research on the condition. Fortunately clinical trials are a huge business, so accessing them is relatively easy. there is a great site: clinicaltrials.gov http://clinicaltrials.gov/ct2/search. Simply type in the condition and scroll through the trials. Select only active or actively recruiting trials. Read through them and search for cutting edge treatments that your diagnosing physician may have mentioned, also look for treatments you've never heard of. They may be the best for you.

In the individual clinical trial description, there should be a name and contact info for the primary investigating physician. Send a brief introductory email (I'll provide the one i used in a separate post).

One quick aside: Medicine and science terms and lingo are foreign to most people. As a result, people are really scared of clinical trials. Don't be. In fact use them as a resource. The term itself sounds rather risky. Rest assured, they are risky, but so is lac of treatment. The FDA and universities have rigorous review boards to ensure that trials are legitimate and work in the best interest of the patient. You are not a lab rat, and will never be treated that way. If you are, that physician will lose his/her license and spend a lot of time in prison.

4. Learn what you can from reputable sites, and note the authors and contributors. Sites like WebMD and Revolution Health (increasingly) provide relevant condition information in a digestible, frequently updated format. It's a good thing to note the contributors and editors of the specific condition page in the event that person is also a research physician. A rather obscure example i can provide comes from my review of the content on the National Marrow Donor Program site for Hurler Syndrome: http://www.marrow.org/PATIENT/Undrstnd_Disease_Treat/Lrn_about_Disease/Metabolic_Storage/Hurler_and_Tx/index.html where Dr. Orchard is the content editor.

5. Take Action: Interview the care team. When you get a response from the research physician, interview him. One very important thing to remember: even though you or your family member is very ill, you are still in control. You are the customer. YOU are interviewing THEM; not vice versa. As I mentioned, clinical trials are big business and these institutions are, in essence, competing for your case. Don't forget that. Have a phone conversation with the primary investigator. Have him distinguish his program from others in the country. Have him discuss outcomes and quality of life.

Also, do your own due diligence and contact multiple facilities. Ask questions and see what "feels" right for you. Who seems to have the best care? Who is more personable? These are important questions to answer prior to a long, expensive, and risky journey. Again, I can provide some general questions to ask in another posting.

So, it doesn't take a genius or hero to find the best care. It takes a couple of hours and the gumption to contact medical professionals and interview them as if they are competing for your business. This isn't disrespectful, it's business. My 'business' goes to the group that provides the best treatment and outcomes, has deep experience with the condition, reduces my workload by managing insurance, providing reference contacts, facilitating schedules and care coordination etc, and treats me with respect.

There is much more to come on what we hope will be a phenomenal experience with Dr. Orchard and the University of Minnesota. So far, they've been incredibly accomodating and extremely professional. We are hopeful now, and they seem to share our hope.

--Big Bro