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Veteran’s Battle to See PH Specialist Ends in Victory

December 2009

 By Racheal Locklear
PH Patient

Racheal Locklear

Racheal Locklear

My Diagnosis

In May 2007, I collapsed while touring in India with a church group. Except for a touch of bronchitis, I was completely healthy and had no idea why I could not breathe well. After a battery of tests in India and a visit to a pulmonologist in the United States, I was sent to Dr. Ivan Robbins, a PH specialist, at Vanderbilt Hospital. Dr. Robbins diagnosed me with idiopathic pulmonary hypertension. He and his nurse, Cindy Fink, were so helpful to me.

The VA is Health Insurance Too

In 2008, I left the luxury of private health insurance when my husband left his job. We moved to St. Louis, Mo., for family support, and I began relying on my veteran’s benefits, using the St. Louis Veterans Affairs (VA) Hospital.

The VA provides a medical benefits package to all enrolled veterans who are released from active duty with anything but a dishonorable discharge. This comprehensive plan provides a full range of preventive outpatient and inpatient services within the VA healthcare system.

The VA in St. Louis did not have a PH specialist, but they accepted my request to visit a specialist at Barnes Hospital at Washington University using my Medicare to cover the visits. Dr. Murali Chakinala, my new PH specialist, would make treatment recommendations to my pulmonologist. In turn, my pulmonologist continued to prescribe my costly PH medications, which the VA continued to cover.

After Moving, I Started Having Problems

In 2009, we moved to Jacksonville, Fla. where I began seeing the VA in Gainesville. My pulmonologist here told me I had to be treated by the VA exclusively if I were to receive medications through the VA system, and the VA refused to prescribe medications and allow me to see a specialist at a non-VA hospital using my Medicare. I did as my pulmonologist directed.

My pulmonologist began taking me off Flolan™ and adding bosentan. My health began to deteriorate. I was back on oxygen 24/7, I could no longer do my exercise walks and I was feeling terrible. I asked her to request an exception so I could see a doctor outside of the VA. She said that “they” don’t approve any exceptions to see outside doctors.

How I Challenged the Challenge

At this point, I decided to fight the system. I contacted the patient advocate at the VA. The patient advocate acts as a liaison between the patient and the medical center. They help to resolve complaints and concerns of the patient in a timely manner. I wrote emails to my representative, my senators, the governor and the president in hopes of getting the VA to allow me to see a PH specialist.

About one week after I sent my emails, staff from my representative’s office (Representative Ander Crenshaw, R-FL) directed me to resubmit my request for outside treatment to the VA as fee-based. If approved, the VA would pay the fee of visiting a physician outside the system, allowing me to see a PH specialist. About two weeks after I resubmitted the request, I was approved to see Dr. Kamal Mubarak at Shands Hospital at the University of Florida.

You Can Do It Too

Maneuvering through a government system can be confusing and disconcerting sometimes, but don’t give up! Here are a few words of advice for anyone going through the VA health system:

  • If you were active duty in the U.S. military and were released on anything but a dishonorable discharge, you are entitled to treatment at a VA hospital.
  • VA will approve fee-based visits to doctors outside of the VA if you can prove it is needed.
  • Using the VA Hospital for your PH medicines (even if you have other insurance or Medicare) is a huge win since there are low co-payments and no lifetime caps. My medicines, oxygen, liquid oxygen and wheelchair are all covered by VA.
  • You must work with your pulmonologist to get medications. VA requires all medications to be prescribed by their doctors.
  • The patient advocate is there to help you. They will also ensure that there is no retaliation from your doctor for asking for assistance.
  • Political influences can be very helpful when you hit a roadblock.
  • Contact your local media for an exclusive on your story. They love a good story. I was featured in an article in the St. Louis Beacon.
  • Finally, you must be your own advocate. Nobody can look out for you better than you. Get educated and be an expert in PH. Know what you are talking about, and it will carry you far. I learned so much from the PHA website, chats and message boards.

In memory of Racheal Locklear, PH Patient