Tony Coelho
Former Member of Congress,Disability Rights Activist and Patient AdvocateFormer Member of Congress, Disability Rights Activist and Patient AdvocateTony Coelho Former Member of Congress, Disability Rights Activist and Patient AdvocateTony Coelho Former Member of Congress, Disability Rights Activist and Patient AdvocateTony Coelho Former Member of Congress, Disability Rights Activist and Patient Advocate

Going into a new Congress and a new administration always holds some level of uncertainty for all stakeholders, but this transition is particularly stressful for patients faced with more uncertainty than usual about what their health care options will be in the future. Having epilepsy myself, and having pushed for the Americans with Disabilities Act as a Congressman, I remain committed to patients and people with disabilities, and making sure their voices are heard in Washington. I intend to carry this same commitment into our work with the new administration and Congress, and I hope others do as well. We must make sure the voices of patients, caregivers and people with disabilities are respected in this next chapter of the health care reform debate.
Although the outcome of this election was unexpected to some of us, the anti-establishment sentiment that propelled this result is analogous to the sentiments that drove the creation of the Partnership to Improve Patient Care (PIPC) and propelled me to get involved. Patients wanted a voice in research and in health care policymaking, because, too often, traditional research is irrelevant to the goals we have for our health and our lives. New payment models are too often developed and deployed without patients at the table.
While I may not concur with everything coming out of the new administration on health care, I agree broadly with the need for policymakers to get out of the ivory towers. Policymakers need to listen to real patients and embrace health care solutions that matter to patients, caregivers and people with disabilities. And frankly, in this drive to value-based health care, it hasn’t always been about us. It’s often about what is most cost effective for the “average patient” and what is most cost effective for the payer.
But I am not average. You are not average. We are the reason a health care system exists - our health and well-being, our treatment, our recovery. That is why engagement of patients and people with disabilities is my ministry.
Last year, PIPC collaborated with patient groups to make it our number one priority to push for patient engagement in the development of alternative payment models. While we’ve seen a transformation around patient engagement in research and with Patient-Focused Drug Development, we still have our work cut out for us in the payment and delivery of health care. We intend to keep pushing for things like a patient advisory panel within the CMS Innovations Office so that they develop models of care that patients can support. And we will keep speaking out against any overreach by CMS to develop new payment and access models at the Innovation Center that do not involve patients in the design. If policymakers want patients at their side driving value-based health care, then they have to build the infrastructure for patient engagement and avoid paternalism.
This administration can build bridges to the community of patients and people with disabilities by demonstrating they do not want a one-size-fits-all system of health care defined by people in lab coats. If this administration truly wants to get input from outside the establishment, then they should be looking to patients for insight as to how to improve the health care system.
Keep in mind that Congress will continue to focus on the issue of “value” in health care, and it will be up to us to explain how patients define value. Similarly, the onus is on us to explain why it is more efficient and effective to have a health system that doesn’t force patients into treatments that will fail them ... before they can get to the treatment that will work for them.
Additionally, the shift to value-based models in Medicare and Medicaid must be aligned with personalized medicine and the Precision Medicine Initiative (PMI), which rarely got mentioned in the campaign and I suspect the new administration will support. The goal of the PMI is to develop targeted therapies for patients. To quote my friend Joe Biden, we should also be paying for care that patients value. That means we have to know what patients value, and we have to be able to measure whether we are achieving it.

​​TO CONTINUE:http://www.huffingtonpost.com/tony-coelho/patient-voices-patient-va_b_14270400.html

SAN FRANCISCO — More patients will have access to a life-saving medicine after a decision was made recently by a large insurer.
According to Modern Healthcare, Blue Shield Life and Health and Blue Shield of California was facing a class-action suit in Northern California after it initially denied a costly Hepatitis C medicine to some patients. The lawsuit was dismissed by a federal judge last week after Blue Shield decided to expand coverage on the drug Harvoni. Previously, the company only covered the medicine for the sickest patients.


Ryan Clary, executive director of The National Viral Hepatitis Roundtable, told The Northern California Record he believes everyone who has Hepatitis C who wants to be cured and has insurance and a provider willing to treat them should have access to the medicine.
“Most people would like to be cured of an infection, that's a chronic, often life-threatening disease, before severe health complications arise,” he said. “Being able to get rid of the anxiety of having a very severe virus that attacks the liver is, for us, reason enough.”
Hepatitis C can lead to a lot of complications from fatigue and muscle pain to liver disease. It's also the leading cause of liver cancer, Clary said. The effects of the disease vary from person to person.
In addition to healing the sick, providing access to this class of medicine can prevent the spread of it, he said.
Clary added that a person living with Hepatitis C may not be suffering from liver disease, but may continue engaging in risky behavior putting other people at risk, he said. If the person is cured they will no longer be infecting others.
Hepatitis C currently kills more people than any other infectious disease in the United States including HIV, Clary said.
“We have the opportunity to actually eliminate Hepatitis C in the United States. The tools are out there,” he said. “It's a serious public-health threat.”
Prior to Harvoni and other drugs in its class, patients had to use a drug that needed to be injected by the patient for 48 weeks. Severe side effects, similar to chemotherapy, prevented many from even finishing the treatment, he said.
Reservations about making it available to all insured patients is probably a combination of two factors, Clary said. The course of treatment needed can cost $100,000. Plus, there is a stigma attached to Hepatitis C in some cases.
Clary said one way it can be spread is by the sharing of needles and the current opioid epidemic in California and the nation has helped to spread the disease.
It's unfortunate that patients have to sue to get access to treatment, Clary said, but he is hopeful that cases like this will mean insurance companies will be less inclined to put such strict restrictions on life-saving medicine in the future.
“I can't think of any other health condition where you would tell somebody we're going to wait until you get really sick before we treat you or in this case cure you. It just doesn't make any sense,” he said.

​http://norcalrecord.com/stories/511069325-insurance-company-s-action-could-mean-big-things-for-hepatitis-c-sufferers

 on the West CTheOpioid addiction is America’s 50-state epidemic. It courses along Interstate highways in the form of cheap smuggled heroin, and flows out of “pill mill” clinics where pain medicine is handed out like candy. It has ripped through New England towns, where people overdose in the aisles of dollar stores, and it has ravaged coal country, where addicts speed-dial the sole doctor in town licensed to prescribe a medication.
Public health officials have called the current opioid epidemic the worst drug crisis in American history, killing more than 33,000 people in 2015. Overdose deaths were nearly equal to the number of deaths from car crashes. In 2015, for the first time, deaths from heroin alone surpassed gun homicides.
And there’s no sign it’s letting up, a team of New York Times reporters found as they examined the epidemic on the ground in states across the country. From New England to “safe injection” areas in the Pacific Northwest, communities are searching for a way out of a problem that can feel inescapable.

JULIE BOSMAN

 TO CONTINUE-  
http://www.nytimes.com/2017/01/06/us/opioid-crisis-epidemic.html?emc=edit_th_20170108&nl=todaysheadlines&nlid=35747334&_r

opiA version of this article appears in print on January 8, 2017, on Page A11 of the New York edition with the headline: Opioid Tide From Coast to Coast. Order Reprints| Today's Paper|Subscribeoid epidemic killed more than33,000 people in 2015. What follows arestories of a national affliction that has sweptthe country, from cities on the West Coast to bedroom communities in the Northeast.oast to bedroom communities in the Northeast.