10+ years of ALS research

I am looking backwards today. I moved to Colorado with my first husband in 1995. I’ve been thinking of him recently. It was his birthday on Saturday (Happy Birthday rb).  A friend of mine is making a video for his son’s wedding and I recommended that he use a song from when I married this former husband of mine, Chet Atkins & Suzy Bogguss, “you bring out the best in me.” (you can play it here.) And no, this song is NOT jinxed or unlucky. My ex sent me a note today that reminded me that even though we’ve been divorced now for almost 10 years, he continues to inspire me to be the best I can be. His email is a post for another day. Today I have ALS (amyotrophic lateral sclerosis; Lou Gehrig’s disease) on my mind.

When I’ve taught students about ALS, I generally have had them read a few posts from BrainHell – a wonderful first person account of experiencing ALS from diagnosis until death. I’m often asked why Stephen Hawking is still alive if he has ALS. Um, not exactly ALS, more likely a variant motor neuron disease know as spinal muscular atrophy type IV.

I started working on ALS in 1995. Soon after I established my own laboratory a few years later, or perhaps before, I met Ian Pearson who had recently been diagnosed with ALS. Unlike the majority of people with this diagnosis Ian has lived with this disease for many years. Tonight I received a number of emails from Ian about his current plight and changes to the Colorado Health Care system that may cut his life short. For this reason, I am going to copy his various emails into this post in their entirety. Please contact me if you would like Ian’s contact information (it’s the only thing I’m going to redact).

One of Ian’s emails ended with this post script “The preceding text has been written using Ez-keys by Words plus, a communication program for people with physical disabilities. I use switch scanning and a piezoelectric sensor switch, mounted on a headband and activated with my eyebrow muscles. This document took roughly 40 hours to write.

In my mind, the most horrible thing about ALS is the LACK of cognitive loss. Imagine, your brain is working perfectly; you cannot talk; you cannot move; if you are lucky, you might be able to blink or move an eyebrow that manages a cursor on a computer screen. Imagine now a decade of this. As you are thinking of these things, I ask you now to read Ian’s letters.

Thank you.

May 12, 2009

Dear friends, family and other worthy souls,

For those of you who didn’t already know, on Monday April 27, one of the local TV news stations ran a short piece about a change in Colorado Medicaid reimbursement policy that has effectively ended the program under which the facility where I live operates. If I have to go out to a hospital for an extended stay, I won’t be allowed to return to where I have lived for more than the last five years and my only option for health care to stay alive. If the policy isn’t reversed the entire program will end on July 1, 2010 and I will have to find a new place to live, possibly outside Colorado.

Here is a link to the story written out with the video on the top right corner: http://cbs4denver.com/health/medicaid.problems.patients.2.995937.html

Below is my reply to the reporter who did the story. As you can read, I was very disappointed and frustrated with all that wasn’t said and the missed opportunities of the piece. I’ve also attached the letter that I wrote back in March to the policy makers and affected parties. It explains the problem and gives my perspective on the situation. On March 10, a patients’ father here, Doug Paris (in the video), held a meeting that he organized, to call attention to this critically important issue. He invited representatives from the state Medicaid board, hospitals, nursing homes, the media, local politicians and family members. That is how the TV news got involved. My letter was distributed at that meeting, the initial interviews were conducted (including with Kate), and Kate recommended that the reporter interview me. Unfortunately the reporter showed up without notice so I didn’t have time to prepare anything to say (it takes a long time to write anything using my eyebrow).

I have a lot of things going on right now but I wanted to get the word out about this. I may follow this with information how you can help. I just got word today that the HCPF board is reviewing the financial statements from the two HBU facilities in Colorado. I am drafting a letter to the HCPF board to emphasize the key points against this flawed policy and may solicit your help to write your own versions of request that they reverse their Medicaid reimbursement policy for the HBU program. Please stay tuned for more information. Thank you for your interest, support and possible activism.

Thankful for all I’ve got and not letting it go without a fight,


April 30, 2009 (letter to the reporter Rick Sallinger)

Dear Mr. Sallinger,

Thank you for your efforts. However, for all of the time elapsed and information that was provided and available to you, I was very disappointed in your finished product. Perhaps your piece is just reflective of the sad devolution of television news into its current state of info-tainment. Both local and national coverage is light on useful information and heavy on sensationalism and triviality. In that vein, I thought that your piece was pretty thin on providing useful information; just a sympathy story with no sense of outrage. In general it’s true that there is less substantive material to fill a local broadcast than national coverage but in this case, a paucity of substantive information wasn’t the problem. This Medicaid reimbursement issue is somewhat complex and multi-dimensional but you missed providing the most critical information. Given that there is such limited material to fill the daily broadcast, the viewers’ attention spans are brief and individual stories don’t exceed 4 or 5 minutes; I think that you could have developed this story into a multi part series. Each episode could have examined one specific aspect; the historic context and nature of the issue (what was the motivation and justification for the State’s policy change?), the personal impacts (as your piece focused) and the actions and consequences of the new State policy and the future implications.

The State HCPF is acting irresponsibly. The bottom line is that the State prematurely made an unnecessary policy change that is ethically, logistically and fiscally unsound. Colorado is effectively trying to save money by exporting and pawning off this patient population on other states. ALL of the affected parties including hospitals, nursing homes, the two existing hospital back up facilities and families/patients are unanimously opposed to it.

If you’re going to condense the rather involved and complex issue down to a three minute piece, you have to chose a specific focus. Quite predictably, you chose the “Look at those poor people” track. Unfortunately this approach left out the most important points to communicate;

1) it didn’t accurately describe the problem,

2) it didn’t state that HCPF has changed the policy to save money without first reviewing with prospective new care providers (there aren’t any) to determine whether the new plan was logistically possible (it isn’t achievable, and a small pilot program would have revealed that) and,

3) no evaluation of the actual financial consequences was planned or conducted.

It didn’t explain that people will be forced to go out of state BECAUSE the only two facilities in Colorado now with the remaining patients won’t and can’t afford to operate under the fixed rate schedule. The State’s proposed alternative is to send us to nursing homes (none of which accept vented patients). The consequences are already being seen as patients who would normally go into the hospital back up program are stacking up in area hospitals, in some cases in ICUs (because their only vents and qualified staff are there), and racking up much greater expenses and consuming critical care staffing and resources unnecessarily. Someone has to be paying for these greater expenses. How are the hospitals passing through these costs? Don’t they have enough of a financial stake to lead this fight with a PR blitz, if not with a legal suit?

This was the whole reason why the Hospital Back Up (HBU) program was established; to provide specialized care units for long term patients on ventilators with minimized costs and maximized efficiency. Only full service hospitals are capable of providing the same level of required care but at much greater cost. The two facilities in Colorado with HBU units operate on very thin financial margins. The imposition of a fixed rate reimbursement schedule (rather than being reimbursed for per patient operational expenses with all of the statutory Medicaid restrictions) is shutting down the HBU program without providing an alternative. The fixed rate reimbursement schedule was developed for Medicaid patients in nursing homes and doesn’t take into account the additional expense of long term full time respiratory care of ventilator dependent patients.

Another dirty little secret about the HBU program is the demand for HBU beds exceeds the capacity of the two Colorado HBU facilities. Both facilities had waiting lists under cost basis reimbursement. The fact that there were no other HBU facilities operating prior to the State’s policy change demonstrates that even cost basis Medicaid reimbursement isn’t profitable. The two programs were established when governmental compensation more closely coincided with operational expenses and remain as vestiges of that time. It’s shameful enough that Colorado has left it to market forces and a grossly inadequate state managed Medicaid program to care for a small vulnerable patient population with no other alternative for medical care. In a 2007 study by Public Citizen that evaluated Medicaid as administered by each state, Colorado was ranked 43rd overall. The individual ranks of the four parameters: eligibility, scope of services, quality of care and reimbursement were 41st, 40th, 42nd and 21st, respectively (p. 58, Unsettling Scores: A Ranking of State Medicaid Programs (2007), http://www2.citizen.org/hrg/medicaid/assets/reports/2007UnsettlingScores.pdf). The summary noted that the low Quality of Care score was attributable to very low quality nursing home care and very low rates of childhood immunization. The relatively moderate Reimbursement score was calculated from all providers under Medicaid (of which, the HBU program is too insignificant to affect an overall reimbursement score). It’s worth noting that this assessment was done before the current economic crisis and state budgetary limitations. The effective elimination of the HBU program defies belief on the basis of ethics, responsible governance, viable logistics and intelligent fiscal management.

I will use the video of your piece with substantial supplementary information in an e-mail PR campaign to my personal and professional contacts to barrage the HCPF representatives with calls and e-mails until they see their wayward ways. I only wish that your reporting had more substance, carried a sense of outrage for bad governance and a message and vehicle for social activism to a much larger audience. I suppose that was too much to expect but for a man in my position, eternal optimism is standard operating procedure and, ultimately, I’ve learned to be my own best advocate.

Most sincerely,

Ian Pearson

March 8, 2009 (ironically my Birthday)

To all concerned,

Background I have been a Hospital Back Up (HBU) patient of the Skilled Nursing Facility (SNF) Unit at North Valley Hospital (recently renamed with the oxymoronic pleonasm, Vista View Care Center) since April 2004. Prior to coming here, I was resident at three other hospital facilities during the preceding eleven months. Over the last nearly six years I have come to a clear understanding of what is required to keep me (and others who require a comparable level of medical care) alive with an acceptable quality of life. I am writing this letter so that those who are making changes to the Medicaid reimbursement policy for facilities like this one better understand those medical requirements and the inevitable impacts of those policy changes. I am also writing to all other interested parties who may be able to influence and affect change to reverse this policy decision.

The Reimbursement Issue

The Colorado Department of Health Care Policy and Financing (HCPF) reduced reimbursement for new HBU patients, effective October 1, 2008. Existing patients were granted an exemption to the reimbursement change until July 1, 2010. The essence of the change is that reimbursement will now be made according to a fixed rate fee schedule rather than the existing restricted cost basis.

Historic Context and Existing Conditions

In order to understand the impacts of a reduced reimbursement one must understand the historic and current conditions under the cost basis reimbursement status.

For years, the SNF Unit here had been operated at a financial loss because of restrictions of Medicaid reimbursement, even under a cost basis, didn’t fully cover operational expenses. The hospital had other facilities that had a sufficient profit so that the extra cost of the SNF Unit was offset enough to be deemed acceptable. This mode of operation provided higher staffing levels, more auxiliary patient services (full time psychologist on staff, a comprehensive speech therapy department with an assistive technology program, a comprehensive and personalized physical therapy program and facilities, etc.), more frequent restorative therapy and showers and a more extensive recreation program than exist now.

After Vibra Healthcare purchased the hospital they fired many employees and closed or greatly reduced entire departments and facilities. Under this mode of operation the financially losing SNF Unit became a greater financial liability. In 2007 Vibra managers announced that they intended to close the SNF Unit, citing the financial burden. They later reversed their decision to close the SNF Unit and implemented a cost cutting strategic operation. Because the auxiliary patient services were already gone, cost savings were realized by increasing patient to staff ratios with reductions in Certified Nursing Assistants (CNAs), nurses and Respiratory Therapists (RTs) on all shifts. In addition, efforts were made to keep the patient population at capacity to minimize marginal costs and maintain more profitable economies of scale.

With fewer staff caring for more patients, stresses upon staff and patients increased and safely margins were reduced. Nurses were routinely required to care for 8 or 9 patients (many with complex, transient and extensive medical needs), CNAs, responsible for 10 to 12 and RTs, for12 to 14. Safe and reasonable patient to staff ratios should be roughly half these numbers for patients who require this level of care (and were under the previous management). Staff turnover required a greater reliance upon temporary agency staff, who individually vary considerably in competency and efficiency, and added to safety concerns.

After the announcement of the HCPF policy change, the Vista View management announced that they would no longer accept any new HBU patients under the new reimbursement protocol. In order to keep the SNF Unit filled to capacity, they began admitting patients with funding sources other than Medicaid. These patients have a wide variety of medical needs, often more complex and extensive than HBU patients and some have dementia, are belligerent or violent, or have other psychiatric issues. These conditions further tax the capabilities and resources of the already overworked staff and take them away from their regular responsibilities. There have been several instances when many, and sometimes all, staff on the unit have had to restrain one patient; on occasion, for up to an hour. During these times, the floor is left severely compromised, if not completely unattended. In addition, these patients have a high rate of turnover, adding a greater burden for nurses with frequent admissions and discharges.

Implications of Reduced Reimbursement

Even before the admission of non-HBU patients to the SNF Unit began, the staffing levels were marginally adequate. I can’t envision any scenario in which a facility could provide safe and adequate medical care to ventilator dependent HBU patients with less funding than under restricted cost basis reimbursement. There are no excesses to reduce or eliminate. If an established facility like Vista View, with well trained and experienced staff, isn’t willing or able to provide care to HBU patients with reduced reimbursement, what facility can? Nursing homes aren’t capable and regular hospitals don’t want us.

A handful of patients who have been discharged from here to facilities not oriented toward caring for HBU patients provide a vision of the future under the reduced reimbursement. All of these patients DIED within three months of leaving here. Lower staffing levels, less experienced and knowledgeable staff and the lack of full time RTs all contributed to the deaths.

Even if HBU patients don’t die within months of being transferred to a different facility under reduced reimbursement, our life expectancies and quality of life will definitely be diminished. What will be cut or reduced from existing programs like at Vista View? The only other facilities that are equipped to provide a comparable level of care are fully staffed/equipped regular hospitals. Operational expenses are much higher at hospitals and they aren’t set up for long term residency. That is why and how HBU units like at Vista View were established.

Personal Profile and Conclusions

I was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, at age 34. My wife and I were basking in the joy of the arrival of our second child,, born just five months before. I was steadily progressing in my career as a hydrogeologist at a small engineering and consulting firm in Denver. I had worked as a carpenter before attending graduate school and earning my Master’s degree. I was an endurance athlete and had always been very physically and intellectually active and had boundless energy and stamina.

I worked for another two years until the progression of physical disability forced me to retire. My illness put a tremendous physical and emotional burden on my wife and family as my wife cared for me at home.

In May 2003 a bad chest cold sent me to the emergency room where I conveniently went into respiratory distress with a blocked airway (if it had happened anywhere else, I would have suffocated). The next day I was given the choice of having a tracheostomy and going on a ventilator or doing nothing and likely dying within a week. I chose to stay alive.

In order to qualify for Medicaid and pay for my care, we sold our home, property and material assets, liquidated our savings and investments and my wife and children moved in with her parents. I am now almost completely paralyzed, confined to bed and am on a ventilator full time. The transformation to my current condition has been extremely difficult and I know that few people would be capable of following a similar path. I accept the life that I have now and maintain a positive attitude. I continue writing my life story and thoughts and beliefs that I want to convey to my children. I want to watch them grow up and leave them an enduring legacy of love and strength. I remain confident in my resolve to live for as long as I can keep having a positive impact in the lives of others.

I have fought too long and hard and my family has sacrificed too much for me to let a bureaucratic policy change lead to my final demise. I know what is required for my care. This reduction of Medicaid reimbursement can only lead to a reduction in the quality of care which has already been cut to marginally adequate levels here and now.

ALS is a relatively rare disease with no known cause, treatment or cure. The likelihood that anyone will get, much less, survive as long as I have with, a rare debilitating disease and would require the level of medical care that I receive, is very low. However, there are many things that can happen to anyone that would put them in a similar situation; paralyzed and on a ventilator, if they wanted to continue living. Just consider that YOU are one bad lane change, one infected wound, one mosquito bite (i.e. West Nile virus), or any variety of accidents, diagnoses or infections away from living like me. What will become of other Coloradoans who meet such a fate? Will the State subject them to a de facto death sentence by committing them to an inadequate health care facility? If not that severe, what quality of life will those people have?

I understand the motivations of the state Medicaid administrators to find all reasonable ways to reduce costs during these difficult economic times. I can’t understand how anyone could impose a policy change, regardless of motivation, without a clear understanding of the full financial, logistical and social ramifications. Furthermore, if, in this case, the policy change is made with knowledge of those impacts, I believe that its time to examine the ethical and moral standards that allow a small vulnerable population to be dangerously compromised for the sake of relatively modest cost savings.

Most sincerely,

Ian Pearson

The preceding text has been written using Ez-keys by Words plus, a communication program for people with physical disabilities. I use switch scanning and a piezoelectric sensor switch, mounted on a headband and activated with my eyebrow muscles. This document took roughly 40 hours to write.