The California State Senate Health Committee expressed its unwavering support for Senate Bill 706, which will create a health task force dedicated to pulmonary hypertension research and development, at the State Capitol on Wednesday, April 24.
SB 706 comes after Lodi native Tracy Espinosa reached out to State Senator Cathleen Galgiani, D-Stockton, in the hopes of establishing a task force. The task force will be composed of medical experts from different concentrations in the medical field with an emphasis on expanding research and raising awareness about pulmonary hypertension (PH).
The bill is intended to resemble a bill that passed in Massachusetts, that led to the creation of a PH task force. The bill was signed into law in February of 2017, making Massachusetts the first state in the nation to pass a PH bill.
The Massachusetts bill established a task force of medical, health insurance, pharmaceutical, advocacy, research and patient experts to monitor and report annually on advances in patient care. The reports have included summaries on research, services, and support for patients across Massachusetts and has led to the development of a comprehensive strategic plan with yearly updates on how to improve patient outcomes.
Lodi native Tracey Espinosa, — who lost her husband to PH, only to have both of her daughters diagnosed with the same disease — felt it was of dire urgency to get the bill written and passed, because of how fatal the disease is.
“We have a PH support group online, and just this last month we lost four children to this disease. The deaths are a result of misdiagnosing the disease, and blanket treatments,” Espinosa said.
PH is a difficult disease to diagnose because it often develops slowly, without early signs and symptoms. When symptoms do occur, they may be mistakenly diagnosed for asthma or another lung or heart condition.
PH results from an increase of blood pressure in the pulmonary artery, pulmonary vein or pulmonary capillaries and causes the arteries and vessels to the lungs to narrow, which results in shortness of breath, dizziness, fainting, leg swelling, and other symptoms.
As some of the symptoms of PH are identical to asthma, the disease is often missed, leading to delays in proper diagnosis and treatment, which costs patients valuable time.
The survival of patients with pulmonary hypertension used to be around three to five years, however, it can take doctors two or more years to correctly diagnose the symptoms of the disease.
The current method of identifying PH is through an echocardiogram, which produces images of a person’s heart and uses sound waves to produce images of a heartbeat and how it pumps blood.
If the echocardiogram records an abnormal pulmonary pressure, then a right heart catheterization is done to measure the pressure in the main pulmonary arteries and right ventricle. The catheter is usually inserted in an artery or vein and threaded through a person’s blood vessel into the right ventricle and pulmonary artery to capture the pulmonary artery pressure.
Normal pulmonary artery pressure is between 8 to 20 mm Hg at rest. If the pressure in the pulmonary artery is greater than 25 mm Hg at rest or 30 mm Hg, it is considered as being abnormally high.
“It is like the vessels in your heart and lungs are pushing blood through a coffee straw. The space is so narrow that your heart explodes and you die of heart failure,” Espinosa said.
After Espinosa’s youngest daughter, Lauren Spencer, was diagnosed with PH, she began receiving treatment from Dr. Jeffery Fineman at the University of California San Francisco Benioff Children’s Hospital.
Fineman is considered to be an expert in diseases related to pulmonary circulation and has conducted research that has led to new therapies for pulmonary hypertension. He has developed a drug called inhaled nitric oxide, which is a pulmonary vasodilator that is able to widen the blood vessels and improve oxygenation.
Fineman also directs a laboratory that investigates the pathophysiology of pulmonary hypertension, which is funded by the National Institutes of Health.
“We usually have about 20 patients in the hospital at a time, and we follow 250 patients,” Fineman said. “Our priority is to provide each patient with the optimal care and that starts with understanding how multifaceted this disease is.”
From the findings in Fineman’s extensive research, he has noted the unique characteristics of PH and how the treatment for PH needs to be more individualized.
“We need to look at PH the same way we look at cancer because what we have found is that PH exists on a spectrum. The more research we do, the better grasp we will have of how many variations of this disease exist and also how to treat each specific case,” Fineman said.
As more efforts are made towards PH research, the fatality rates could diminish exponentially over time, Fineman stated.
Fineman, who is an advocate for SB 706, believes that the passage of the bill will increase medical exploration into various treatment options.
“By establishing a task force we can mobilize efforts that can expand the current understanding of this disease, and find possible causes because we still don’t know how people develop PH,” Fineman said.
SB 706 will create a pulmonary hypertension task force composed of members from the State Public Health office, the Director of Health Care Services, representatives from the California medical association, the California Association of Health Plans, representatives from the pharmaceutical company that creates drugs for PH, medical advocacy groups, and an individual with PH.
“This bill will allocate more funding for research and development because we need to put more funding into medical training specific to this area,” State Senator Cathleen Galgiani said.
According to Galgiani, there is a shortage of doctors who specialize in PH, which means most people who have PH are usually referred to a cardiologist instead of a PH specialist.
That, in turn, hurts the patient’s ability to successfully treat the disease, because many cardiologists lack the skill set to properly diagnose and treat the disease.
“The purpose of the bill is to provide preventative services rather than conducting treatment after a patient’s condition has worsened,” Galgiani said.
“The bill passed with unanimous consent, which means it didn’t even go to a vote,” Espinosa said.
Before SB 706 is expected to be brought in front of The California State Senate Health Committee to vote in August, it will have to go to the Senate appropriations committee for review.
“Since the bill has a cost associated with it, it’s our job to make a case that the money we spend in research and development will outweigh the cost of medical costs in the future,” Galgiani said.
Espinosa is optimistic that the bill will pass in August, and hopes that its passage will encourage other states to follow suit.